Category: my blog

Recently I read the following article below and boy did it resonate 100%! I could have written the same article. This may come as a shock to some of you, but I don’t receive any benefits from the government for being disabled. I don’t qualify for anything because I have a good job and they see that my salary is too high to receive any benefits. So, instead, I get to pay taxes to help other disabled people. I am blessed to have the job I do, but I work hard to earn the money I do, which almost all of it goes to bills. I have had to resort to using my credit cards to pay for medical expenses. This message is not intended for you to feel sorry for me, but instead to raise awareness around how messed up our government is. It’s as if I’m being penalized, haven’t I been penalized enough with my paralysis.

Here is the article:

HOW EXPENSIVE IS IT TO BE PARALYZED ANYWAY? by Ali Ingersoll

THE PRICE OF ADMISSION TO EVERYDAY LIFE

I recently sat down and did something mildly horrifying: I added up what it costs me today just to live my life as a quadriplegic.

Not my mortgage. Not groceries. Not dinners out. Not vacations. Not wine. Just the extra expenses that come with paralysis. And the number is pretty damn eye-opening.

THE PARALYSIS PRICE TAG 💰

👩‍🦽 24/7 caregiving: $75,000–$90,000/year
🏥 Health insurance: about $15,000/year
🩺 Medical supplies insurance doesn’t cover: about $6,000/year
🔧 Equipment maintenance and other disability-related expenses: about $5,000/year

That puts me at roughly:

💸 $101,000–$116,000 EVERY YEAR.

Just to keep this slightly high-maintenance body operational. And that does not include an accessible vehicle. If you are fortunate enough to own a wheelchair-accessible van, you can easily spend another $40,000–$90,000 purchasing and modifying one.

Welcome to paralysis. The membership fees are spectacular.

HERE’S WHERE IT GETS COMPLICATED

I am not on government benefits. I work full time, I’ve built a great career, and I’m incredibly fortunate to make a very good living.

But when roughly 90% of what you earn goes right back out the door toward the expenses required to live and work, the definition of making a “great living” starts getting a little weird. 💸

And this is where people with disabilities can get screwed from both directions. If you depend on government benefits, earning more money can put critical healthcare, caregiving and other supports at risk.

But if you make enough that you no longer qualify? Congratulations. 🎉 Now you get to pay the extraordinary cost of disability yourself.

WHY IT MATTERS ❤️ INDEPENDENCE IS NOT FREE.

We love talking about independence, employment and getting people with disabilities into the workforce. But for many of us, working requires caregiving, medical supplies, reliable equipment, transportation and healthcare.

Those things are not luxuries. They are what make employment and independence possible in the first place.

I am enormously fortunate. I can work. I have support. I have built a life and career I am very proud of.

But I also know many people with disabilities doing impossible financial gymnastics every month just trying to stay healthy, safe and independent.

So when we talk about disability inclusion and employment, maybe we also need to ask the question nobody really wants to ask:

Can people actually afford the independence we keep telling them to pursue?

Because the wheelchair is usually the part everyone sees. ♿️ The six-figure price tag attached to living in it is the part they don’t. 💸

For the past 17 months, unconsciously I have been building my safe space. – in my mind.

It started out with an infatuation with watching Bob Barkers, the Price is Right. They have a channel dedicated, 24×7, to Bob Barkers, the Price is Right on Samsung TV. I’ve watched almost every episode. It was the only channel I watched for 6 weeks, and I still binge watch it sometimes. I was reminiscing about when I used to watch it on sick days (every Gen X did) and in the summer, 10:00 am, I didn’t miss an episode. Rewatching it again, took my mind back to the 80’s and pulling memories forward. At the time, I didn’t appreciate how simple life was. The only thing I had to worry about was completing the chores my mom gave me for the day.

Life was easier.

Music was better. I could almost smell the scent of coconut from tanning lotion I would put on myself before I would lay on the deck with my boom box listening to my mixed tape that I recorded songs from Casey Kassem’s American Top 40 for the week.

Home cooked meals my mom made. I remember it was a cold, fall day, but not too cold because I was outside putzing around. It was close to supper time, so I walked into the house, and I was instantly hit with the smell of beef roast with potatoes and carrots cooking in the oven. A fire had been started in the fireplace, so the house was warm from the fire and the oven. I would sit down in dad’s chair and watch tv until my dad came home from work and then supper was ready. We always had dinner together. All five of us had our own spots at the dinner table. Dad would talk about how much of a crappy day he had and my sisters would talk about what they did for the day. I don’t remember what I talked about, but I know I was very chatty, so I’m sure I got my words in. Life was simple and easy because of routine.

I’ve been listening to 80’s music lately. I know all the words to songs that I used to jam to. Chicago’s Greatest Hits – hard habit to break, will you still love me and you’re the inspiration. Hall and Oats – kiss on my list and private eyes. Christopher Cross – sailing…I could keep going on and on. Music was the best in the 80’s. Just listening to it triggers so many memories from when I was in elementary school and junior high. I still have hard copy pictures from that time. I remember all the sappy songs would remind me of the guy I had a crush on. I used to add his name to Chicago songs just to personalize it. I’m laughing out loud right now. Life was simple – easier.

I’ve been following this girl on Instagram and Tik Tok and all she posts are items from the 80’s. Cabbage patch kids, trapper keepers, Atari, Walkman, aqua net hair spray – hard wired rotary phones where you had to talk to your friends with your family around. Remember when we had to cover our books for school with paper bags? Then I started to follow 80s commercials –

“excuse me, do you have any grey poupon?”

“give it to Mikey, he eats everything. He likes it…!”,

“who wears short shorts…”,

“this is your brain, this is your brain on drugs, any questions?”

“the best part of waking up is folgers in your cup.”

I bet reading those took you back to the 80’s too. That was why the 80’s was so great. That is why I remembered words to songs, tv commercials, memories are easy to pull from my memory bank.

See what I’ve been doing is building a safe space for my mind to escape to. A time when things were easier, simpler and filled with laughter and joy. A time when my mom and dad were alive. When I had a family.

A time that wasn’t my current reality.

I didn’t have to think about the fact I’m paralyzed

I’m an orphan and just wish I could talk to my mom and dad.

Not having to feel the pain I’m in from morning to night.

That I don’t have a choice anymore because I can’t count on my mom and dad to be there for me.

That my relationship with my sisters is so complicated.

That I have to work to keep what I have left.

Being reminded that this life is the life I don’t want.

Time to escape.

There is a misconception that when you are paralyzed, you don’t have pain. Here’s the honest truth.

When I was discharged from rehab at Region’s after two months, I still didn’t have complete feeling above my injury in my back or the back of my head. I started to worry because I had already lost all feeling from the sternum down, now will I not feel my back and the back of my head too?

Over the next 10 months, the feeling slowly came back…and all of a sudden, I’m feeling pain. The first spark of pain started along my chest and up and down my arms. I could only explain it as having a severe sun burn to the point where you don’t want to wear clothes. My Dr started out by giving me prescribed topical cream. It did not work, so we tried a different brand of topical cream. That didn’t work either. Eventually, the pain started to go away as I started to exercise more at physical therapy, so I felt good with finding the solution. That lasted a short period of time.

Then came the burning pain under my shoulder blades. I could have swore I developed some sort of pressure sore under my shoulder blade. I was still learning about all of this. I couldn’t develop pressure sores behind my shoulders because the shoulder blades protect the muscles. What was this pain then? I learned that the pain was from me slouching forward throughout the day and it was muscle fatigue. Why did I not experience this pain before my paralysis? I started doing exercises where I would squeeze my shoulders back throughout the day, and that helped, for a period of time.

Pain continued developing in all sorts of places.

The muscles in my back would tighten up so much that I insisted something was wrong and a CT showed everything was intact.

The back of my head started to hurt that it made sleeping on my back impossible. I would have to sleep on my side and wake David up multiple times to turn me from one side to the other.

One day I woke up and my hands were swollen and it hurt to spread my fingers. Where did that pain come from?

My under arms, pits and the side of my breasts started to hurt. The shooting pain in my breasts occurred nightly…and then daily. Then I learned it was caused from me not moving my arms enough throughout the day. Who would ever think of this type of pain caused from not moving my arms?

The pain then showed up daily.

Daily, it feels like my spine is protruding out and when I first go to lay in my bed, it’s excruciating pain until my back can relax enough to lay flat. I’m not getting wrinkles from old age; I am getting them from the face I make when I’m in pain.

Daily, the sensitivity across my chest and down my arms were consistent enough that I could only wear one type of material, think of a fuzzy teddy bear. I ordered multiple “fuzzies”, I call them, because I wore them every day, all day. Even when I slept at night, I could not have the sheets touch my chest or arms because it hurt so bad, so I have to drape a fuzzy across my chest every night. Last week, the pain was debilitating but I still needed to work. We positioned my laptop where I could type and not have to move my arms. If you learned above, not using my arms results in arm pit and side of my breast pain. To help pain, another pain is created

Daily, my butt cheeks burn because I’m sitting on them all day. I try and relieve the pressure by leaning back in my chair, but sometimes I get so busy that I forget to lean back.

Many nights, I go to get into bed, and I can’t side transfer because my spine feels like it is protruding (it’s really muscle tightness), my butt cheeks burn (which you could say it’s good that I’m feeling it, because I’m not supposed to feel anything, yet it’s bad that I can feel pain) and I have pain in my arm pits and the sides of my breasts. When I finally get into bed, I lay down and my back is so tight it takes minutes to relax, my butt cheeks hurt with no relief and the back of my head hurts.

I have pain pills. I’m prescribed to take them daily. I should take them daily because I do need them. For some reason I don’t take them. I don’t know if it’s because physical pain sometimes feels better than the mental pain, I go through daily?

I share all of this not to complain, not to ask for prayers, not to have people feel bad for me…but instead to help educate that people who are paralyzed do feel pain. All of this is new to me and doesn’t make sense. Isn’t losing feeling from my sternum down enough? Haven’t I endured a lifetime of struggles in the past 16 months? What is going to be next? What will I lose next? This is why I started to read the book of Job. Job and I have a lot in common.

Pain is inevitable. It comes in all forms. Complaining, crying, screaming doesn’t help. Accepting is all I can do.

_________________________________________________

Medical Update:

I will be getting a reconstruction of the Monti channel I had done last December. Surgery is September 23rd and should take up to 9 hours. I will be in the hospital for a week. I feel good with this urologist and feel confident that he will make things right for me.

I just found out last week that I don’t need back surgery. I was able to track down my original neurologist who performed my surgery after my accident. I was told she moved out east, so when I went to look where she ended up, I was happy to find out she ended up at the Mayo in Eau Clair. During the consult, we covered the three issues I was told of. I was fused at a 30 degree angle and was hopeful to get this fixed. My neurologist viewed my recent films and my body is naturally healing the curve and I’m at about 22 degrees now. The bone spur that was pressing on my spinal cord, my neurologist reassured me she removed that bone spur when I had my accident. Lastly was the loose screw. My neurologist said the screw is at the bottom of my fusion, not the critical area. If I wanted to fix this, they would need to fuse me slightly below the middle of my back and this would reduce the limited flexibility I have. She is not worried about the screw coming out. This is good news.

Nothing could prepare me for what happened on April 21, 2025. Once I fell off and hit the ground, I was instantly paralyzed. I remained calm, and alert, each step of the way… until the pain killers kicked in and my subconsciousness kicked in. I don’t remember anything, so I had to ask my BFF, Kim and Mark, my ex-husband (I hate saying ex-husband, I need to come up with a better noun because he’s sooooo much more to me than that!). I digress. I asked Kim, “What was I saying when I was out of it?” and she told me, “You were praying to God that you weren’t paralyzed.” That did not surprise me one bit. My faith was strong before my accident. God had carried me through the pain of losing my dad. I had true testament that God could heal. That God is my strength, and my faith is what kept me going. Until it stopped.

It wasn’t until a few weeks after I was in the hospital when I noticed that my prayers were not working. That each day became a bigger challenge than the next. I remember every morning when I would eat breakfast, I would watch the 700 club. I really enjoyed watching that and hearing people’s healing testimonies. Until one day I questioned “Where was God with my healing?” I was, and still am, so thankful to my church family. I had people praying for me left, right, up and down. I had people tell me that their church was praying for me. I had people reach out directly to tell me they were praying for me. If there was ever a time when I needed prayers, it was then. I remember my friends Kathy and John M sharing with me that they would pray for recovery for me every morning. Until one day John said, “We aren’t praying for the right thing for Shelley, we need to pray for a miracle for her!” That is when the prayers started to change for many. I had an army of people praying for a miracle. But that prayer has yet to be answered.

I found myself growing angrier by the minute at God. Questioning him. Questioning my faith. Questioning for all these years I had done my best to be a disciple for him. Why? I stopped watching the 700 club in the morning. When people would say they were praying for me, I gave a half smile and nodded. I didn’t want people to pray for me anymore. It was a waste of time. I would tell those I was close to, to not pray for me and I remember my BFF Kathy D saying, “Shelley, you can’t ask me to not pray for you, I will keep praying for you.” and that made me angry. I had an army of people praying and for over a year, I did not witness any prayers being answered. Yah, yah, I know that prayers are answered on God’s time, not mine, but I kind of thought what I was going through was a big enough deal to be heard.

Instead of talking to God, I started to talk to my parents. I imagine my parents being sad watching what I was going through. I know if they had been living still, they would not be handling this situation well. For the majority of my life, my purpose was to make my parents proud. There is nothing about what I was going through that I think would make my parents proud. I wasn’t living, I was surviving. Those around me would praise me for making small accomplishments, and my response was always “I don’t have a choice.” I still feel that way today. The progress I’ve made isn’t anything more than just time. I know it wasn’t because of anything God had done for me. The thoughts of God had left my mind. I stopped watching church because I didn’t want to hear scripture. I didn’t want to hear how God is the way, God loves each one of us, God this, God that. I was content with where I was and that was angry.

That lasted up until about two months ago. My dog, Khara, has had bladder cancer and a plethora of other health issues for the past 2 years. I noticed one day that she really started to decline. She was squatting to pee, and nothing was coming out. There was blood mixed with urine on some of her puppy pads. She was tired all the time and just wasn’t herself. Mark and I had the talk about what the end-of-life plan would be for her. I even messaged him twice thinking it was time. He would take her for a few days to give me an emotional break because I was a mess. Depressed doesn’t describe the hurt I was feeling just thinking about not having her in my life. Then, day by day, I started to see the spark come back. As this progressed, I started to pray for God to not take her from me. I wasn’t ready. I had loss so much, I could not live with losing her too. I prayed, and I prayed and today, she is still ill, but not near as close to death as she was. My prayers were answered.

From then, I started to pray for my friends. I wasn’t quite ready to start asking more of God because I didn’t want to become disappointed again. Then it happened…one God wink here; another God wink there. I slowly started to see again how God is showing up. Now, I know some of you are thinking “Shelley, God has always been there for you, you just don’t always get to see what his plan is.” That may be true, but during the worst time of my life, I needed to see something. I didn’t see or feel anything. I still question “Why God wasn’t there to help prevent my accident?” I’m human. It’s a valid question. Until I know of the answer, day by day, I will continue to rebuild my relationship with God until someday, I will know why.

Work has got me drained by the end of the day. It really is a good thing, it just delays me writing because I have a bedtime now of 8:00 so I can be up and alert for the new job. I feel like a school kid again.

I’ve been wanting to write about this topic for a while. I’ve delayed doing so because it’s my reality and it hurts.

When I was told I was paralyzed, they didn’t hand me a book on what life will be like. Sort of like when you are going to become a new parent, they don’t give you a guide for that. So I’ve had to learn things along the way.

Something I didn’t expect or even think about is how much my anatomy was going to change.

I always used to love to go get pedicures and especially to get my toenails painted for the summer. I loved to show off the bright colors because they looked great in the sand. Now I look at my toenails and they are discolored due to lack of circulation. Sure I can paint my toenails, but it doesn’t hide what’s underneath.

My calves. I had strong calves. They were strong because for years I worked hard to strengthen them to ride my horse. I loved it that I could finally move Dexter to the right just by pressing in with my calf. Now my calves are deflated – unrecognizable – with no muscle, only flabby skin and bone.

My thighs. They too were strong for riding horses. I always had big muscular thighs. I had my dad‘s legs. My mom had chicken legs which we always used to joke about. I loved when someone wanted to leg wrestle with me. I would easily take them down because my legs were strong. Now my thighs have deflated, no muscle – only flabby skin.

The big surprise for me was my butt. Recently, David had to take pictures because I had been dealing with some bed sores. The first time I saw a picture of what my butt looked like I cried. There is no more muscle, no more fat, just flat skin with my butt bones sticking out. I have learned that bedsores need to be taking seriously because people with spinal cord injuries have died because bed sources have gotten so bad. At first, I didn’t understand how that could happen because there was muscle and fat to protect that. In 15 months, my butt has changed so much that my skin can now break down so easily and I have to be on constant alert for bed sores.

Before my accident, I had lost 30 pounds and I was the lowest weight I had been in years. I had felt so comfortable in my skin. After my accident, I gained the 30 pounds back and then some. All of it is in my stomach. I didn’t know that when you eat, it’s very difficult to exercise and burn those calories off when you’re paralyzed from the chest down. On a daily basis, from the chest down I don’t move. Therefore, gaining weight is pretty simple. Now I have a big belly where I look 7 months pregnant and there is no way to hide it.

My arms look like they have aged 20 years. Have you heard of crepey skin? Definition: thin, fragile skin that looks finely wrinkled, loose, and resembles the crinkled texture of crepe paper. I have crepey skin.

I didn’t know these changes were going to happen. I didn’t mentally prepare for my anatomy to change so much. I no longer feel womanly, instead I feel disabled. I look at my body and I don’t feel it is mine. My entire life I dedicated to losing weight and looking good. Now I would do anything to get the muscle and fat back that I’ve lost. I grieve who I used to be. I am not accepting who I am.



What goes up, must come down.

I started my new job on July 13th. This role is a tactical change management role. Starting hit differently than before my accident. I’ve been blessed with my career. 10+ years ago I started as a tactical change manager where I learned the foundational tools needed for my role. I advanced then job to job carrying my toolbox and applying the foundation and then leveling up to setting strategy. I was able to maintain this role for a while until learned how to be a leader with having a leadership title – Shelley Goodman, Director of Change Management. I finally made it.

Then my accident happened.

I went back to work after 2 months of being off. I went back to the role of Director of Change Management, but yet, I wasn’t any longer. I didn’t have the confidence. I didn’t know how to adapt to being gone for so long. I couldn’t catch up on what I had missed. My teammates supported me daily. They gave me grace when I needed it, jumped in to help in areas I had forgotten, and overall, always checked in to see how I was doing. I felt safe. Safe with this work family I became a part of and relied on far more than I had thought. Then June 1st came and it ended. I had to leave my teammates who knew my story but treated me all the same. I left teammates who had continued to help me to be stronger both personally and professionally. I left my safe space, left to grieve another area of loss.

Then I got a message on June 16th from a recruiter who said, “you have an awesome background, and I’d love to connect with you on an opportunity”. She was talking about the background I worked so hard to build. I felt honored. By then, I had applied to well over 70 jobs and had one interview. I quickly responded that I was interested in learning more. The ball started to roll and then I learned the role was for a tactical change manager. The job that started my career, I would be starting again. Is this foreshadowing? June 25th, I interviewed for the job. June 26th, I got the call that the client wanted to work with me. I froze and couldn’t respond. I froze out of fear. I had to call back the consulting company I would be working for. I needed to process what was happening and the fear. I haven’t been afraid about starting a new job in years. Then it hit me.

The people I would be working with didn’t know the Shelley before the accident. They didn’t know Shelley who had an accident. They certainly didn’t know Shelley who lives day-to-day with a spinal cord injury. The Shelley who can only live one day at a time to survive. How do I tell them about how the old Shelley died and that I don’t know who the new Shelley is yet – she’s a work in progress. Will they accept me. Will I accept myself as a tactical change manager instead of leading the change.

I’m now 7 days into a new job. I immediately felt welcomed. I was able to share my story with some, because on camera I do look different, and so far so good. I’m still transforming from being a leader to a doer, but that will come in time.

Another area that I need to be ok with being the new Shelley.

One day at a time.

David and I went to a big box store for the first time. I rolled in without fear and felt good. Produce was easy. The sewing aisle was easy. I grabbed some fleece because I want to make another blanket for my wheelchair—still easy. Then I went to check out the clearance section, and that’s where it hit me. My eye level is now the height of a 6‑year‑old. Anything pushed to the back of the top shelf was invisible to me. It’s a strange, heavy moment when you realize something so basic—where your eyes land—is permanently different. We wandered down the Lego aisle, and that sealed it. The sets kids could afford were right at my level. The pricier, more complex ones were up where adults stand. It was such a clear, physical reminder of how much has changed. I share this because these small, everyday moments—things I used to do without thinking—now come with impact.

But the real gut punch happened at checkout. This is when my view changed. I witnessed the actions of a child and my actions as an adult. Two teenagers were using the motorized scooters for fun. They weren’t disabled; they just didn’t feel like walking. An employee confronted them, explaining the scooters were limited and meant for people who genuinely need them. One girl shrugged and said, “Oh, there were four more left, and I do have a hard time walking,” as she stood up, packed her groceries, paid, and moved around with no issue. Meanwhile, her friend scratched the scooter trying to maneuver around her. I thanked the employee for saying something. Even though the teens blew her off, she did the right thing. I left upset—because those girls can use their legs. They chose convenience and entertainment over respect. And moments like that remind me of my reality, and how much I would give to be able to walk around a store again.

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The common superstition is that bad things happen in 3’s. I’d like to start the superstition that good things happen in 3’s and here are mine from last week!

thing 1. I’m excited to share I got a consulting job! I’ll be working in an organization run by a woman I knew at Cargill, who left in 2024. I will be a change manager for a very similar project that I completed at Cargill. This time around, I’m the do’er vs. the one leading the strategy for change management. Truthfully, I wasn’t sure if I would be ok not leading the strategy. I am beginning to believe that being a do’er is the right thing for me. At Cargill, when I returned to work 2 months after my accident, I was familiar with the people. The people who knew me before my accident – were the same people who welcomed me back with love, grace and understanding. I felt safe with the people I worked with. They knew me and I knew them. Now I fear will the new people I work with welcome me with grace and understanding? I start on July 13th, I’ll make sure to update you along the way.

thing 2. For those of you following the journey with my “botched” Monti surgery, I finally had my appointment with another urologist to get a second opinion. Let me catch some of you up a little. I had a Monti procedure in December A Monti surgery is where a catheterizable channel used to empty the bladder is constructed. It is similar to the Mitrofanoff surgery, which uses the appendix, but the Monti uses a small segment of the small intestine to create a tube that connects the bladder to the abdominal wall. The opening on the abdominal wall is called a stoma, through which a catheter is inserted to drain urine. Fast forward 7 months and I have not healed from the procedure. I’ve encountered more problems than I can count on both hands and feet for months. Every month I would go in for a procedure to see how well I was healing. Every month I was let down. The only fix would be to let the current channel heal over and do the surgery over. But there was one small (in reality large) qualifier – I needed to lose 35lbs before I could have the surgery. Losing 35lbs being paralyzed is near impossible and would take me well over a year. I began to feel that I would never heal, so I finally I booked an appointment for a second opinion. I just had the appointment. Dr. L reviewed my medical records for the past 7 months and in a nonchalant way, agreed with my comment of having a botched procedure and the goal of losing 35lbs to fix it was absolutely unnecessary. So, the good news is Dr. L would be happy to redo the procedure, and I don’t need to lose the weight! I’m so excited. Now I just need to weave the procedure into my new work schedule (gulp… I hope they understand). I’m glad to have resolution for this.

thing 3. I’ve been able to transfer myself from my bed to my wheelchair and back…AND this weekend I moved my legs along the way. This may not seem like much for able body individuals, but I promise you when you are paralyzed it’s a huge milestone! I don’t like to say it out loud, but what has made it easier is my legs have significantly shrunk making them light enough for me to move. Watching the fat and muscle slowly disappear has been really difficult for me. I have always had great muscular legs, no matter weight I was. Not anymore. Learning to move your body when you’re paralyzed is completely different than when you’re not. I hope my words can help you visualize what a transfer is like.

From my bed to the wheelchair with my wheelchair placed next to the bed.

1. Sit up on the side of the bed (I need help with this still, my arms are not strong enough to push me up).

2. Then I place a long “transfer” board under my butt and place the other end on the seat of the wheelchair.

3. using two pushup bars, one in each hand, I lean forward far enough to lift my butt, but not too far where I’ll fall forward, and I slide across the transfer board pushing up with my hands until I make it to my seat.

I learned how to do a transfer immediately following my accident in PT. Transferring myself improves my independence. When I first learned how to transfer, I needed step-by-step assistance. I always had a blue transferring belt wrapped around me. The scariest part for me was to lean forward far enough to move my butt. I had to trust Emma (my super-hero PT) enough that she wouldn’t let me fall forward or backwards. Falling was a huge fear of mine. Remember, my torso is also paralyzed, so I didn’t know how to control my core. I certainly couldn’t focus on moving my legs as well while I had so many other steps to take. Each tiny step, I had to trust Emma, and also myself, to slide over. When I got home, depression kicked in and I didn’t want to try anymore. I leaned on David using a Hoyer to move me from bed to chair consecutively for months. I’d try here and there to do a transfer, but it was like starting all over with having to trust David to not let me fall forward or backwards. David helped in PT with Emma to help me transfer, so he was familiar, but it still required him to 100% be able to help me David has done an amazing job of being patient with me. In the past couple weeks, I finally told myself to just do it and if I fall, I fall. I’ve been transferring daily for a while with me guiding my body and David moving my feet. Yesterday, I finally did it without David in the room, by myself and moved my feet along the way. This feels good.

Thankful for these 3 good things that happened this past week.

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Every day is different when you have a spinal cord injury (SCI). I am not a gambler, but I know Russian roulette wouldn’t be a game that I would choose to play. But ever since I got my spinal cord injury, I spin the wheel daily and hope to not lose. Today I lost.

I woke up at 5:25 this morning with a gurgly stomach. Having stomach pains while in bed, creates a lot of anxiety. I can’t just throw the sheets back and run to the toilet.I require David (my caregiver, my best friend and sometimes my super hero) to help transfer me from my bed to the rolling commode and then to the toilet. The anxiety doesn’t go away until I’m over the toilet, which takes maybe 10 minutes.Then again at 8:50, David to the rescue again. This is how my morning started today.

After finally relaxing from my early wake up call, I started to feel the sharp pains from my lymph nodes in my armpits and around my breasts. I’ve been dealing with my lymph nodes filling up for a while now and have been working with my physical therapist on ways to release them. I have never heard of the need to release lymph nodes before, but because I don’t move my arms and core all the time, my lymph nodes fill up. This is something that was not taught in spinal cord injury school.

Mid-day, my legs start to feel prickly. I like to believe it means I’m getting feeling back, so I focus hard on one leg and use the energy I have in that leg to move it. With how hard I try I am shocked that my leg doesn’t move. I try the other leg, and do the same, same result. The prickliness in my legs feel like after your leg falls asleep and then it starts waking up, you know that feeling, that’s what it feels like.im told it is nerves. Many SCI patients struggle for life trying to minimize the pain, I am still in the “hopeful phase” that it means good.As I lay in bed continuing to feel other pain in my back, and my chest, I can’t help but cry.

AD started to weave itself throughout the day. Remember what AD is? Autonomic dysreflexia.(read my first blog). The chills, the headache and sweating.

THIS is my life. Pain, fear, unpredictability.Those who have hope tell me it gets better – but those people aren’t me. Those people didn’t just experience the above. I have far more bad days than good. When days like this happen, I think of all the things I can’t do. My mental health is what tears me down. The negative thoughts that play over and over on repeat. I scream “it’s not fair”, I scream and plead a lot. No one can help me when I get in this state of mind.

I had plans today. To hang out with my friend Kimberly. We were going to go to Mall of America and grab lunch. I lost on the wheel today.

Today I turned 49 at 9:30 am. Every year I remember the story my mom told me about when she went into labor. My mom was not only the best mom, but she was also the best wife. As far back as I can remember, my mom would pick out my dad’s clothes for the morning and make sure that once he was dressed, a hearty breakfast was waiting for him. She did this 7 days a week (well, she didn’t need to pick out his clothes on the weekend – dad could throw together a run-down t-shirt and jeans to work outside). On June 30, she forgot to grab the grape jelly for his toast. As she grabbed the jelly, she felt her water break and she dropped the jelly. Only a few hours later, mom delivered wee little me. I had blue eyes and white hair – very different than my sisters who have dark hair and brown eyes. The story always differed whether it was my mom telling the story or my dad telling the story – but what stayed true for both stories is that I was supposed to be “Michael Joseph”. So when the Dr said “It’s a girl”, they had to think of a different name, so they went with Michelle Ann. So here I am.

Reminiscing that story, reminds me of my mom and her strength. My mom was the strongest person I knew. The strength it took for my mom to be my dad’s wife was not for the weak. Expectations were high and if she didn’t meet them, she heard about it. I’m not trying to paint the picture that they had a bad marriage, because they didn’t. My parents loved each other deeply in a way that I could never understand, but I didn’t need to. My mom went from being a wife, to a mother, to a housewife, to a special needs teacher, to working a 9-5 job all the way up until she passed. My mom loved to work and never complained. She was so proud to have a 401k, proud to have her own spending money and when she got a raise, even as little as a $.10 raise, she was so excited and appreciated it. She saw the good in everyone and no matter what, she just focused on being a good employee. Dad on the other hand, all I can remember is he hated working and every day he came home my mom had to hear all about it. She just listened, never offering any advice because it would not be the right thing to say.

My mom taught me strength. She taught me how to carry through tasks that were given despite how you feel. She taught me how to take care of others, even when it was hard. She taught me the importance of waking up and being the best version of yourself. She taught me how to appreciate the small things. She taught me that it was ok to cry, even though I didn’t see her cry often. My mom was the best. She went through a lot in the short 63 years she was here.

You probably are appreciating hearing about my mom but wondering where I am going with this. I learned how to have a giving heart and caretaking attitude from her. She was the first person I took care of. The strength within me comes from her. That same strength is what peaks behind the fear I have with this new life. I could never be as strong as her, but I thank her for teaching me how important it is for a little girl to an adult woman to find inner strength during difficult times. I was a caretaker to my family, friends and strangers. It was a part of my DNA. I didn’t expect that one day I would be the one who is being taken care of.

My mom has been gone for 13 years, December 16th of this year. My dad has been gone 3 years, June 9th. The strength my mom gave me and the stubborn attitude my dad gave me is what feeds my will to continue trying so hard. I never could have predicted not having parents at 49 and I certainly didn’t predict I would be paralyzed at 48. I miss both my parents like crazy and often cry out to them because I don’t know how to navigate this life. It is those moments that I remember how loved I was and how proud both of them were of me and I know they still are as they watch over me.

Happy birthday to me and thank you mom and dad for the life I was blessed to have.