I’m so sorry.
I’m sorry your life was so hard. You did not deserve the hand you were dealt but you played it with amazingly little complaint. Your few wishes were always for the most basic of things such as being at home and some freedom to cruise gravel roads. I’m sure you wanted to walk, to get around without the constant struggle you endured for 28 years, but you accepted it and didn’t pine for it out loud.
I’m sorry that your physical strength was waning and I’m sorry that made a tough situation even tougher. Transfers in and out of your wheelchair and bed became precarious and frightening. I’m sorry that the most basic things such as getting dressed or getting out of bed were a battle that you fought daily and that almost none of us can appreciate. Every day, I list the things I’m grateful for and I often remind myself that I can roll out of bed, stand up and walk to the bathroom. Who doesn’t take that for granted? You didn’t, not for the last 28 years.
I’m sorry that as soon as it snowed, you became virtually trapped in your apartment. All the snow, even when sidewalks were cleared, became hurdles that were at times insurmountable when trying to cross a damn street. I’m sorry that our small, rural hometown didn’t have the appropriate amenities and resources that larger towns do. Basic things such as sidewalks without curb drop offs, buildings without steps and doors that are wide enough to roll through were surprisingly scarce. Sometimes even parking in an accessible space was difficult, let alone if some jerk parked over the painted yellow lines made for van accessibility.
I’m sorry our Dad and especially our Mom had to endure all of this with you. She did her best and cared for you in the ways she knew how even when those ways were not the ways you wanted to be cared for. It eventually consumed her thoughts, her time, her days. Her heart sometimes broke multiple times a day for you. I’m sorry I couldn’t change that. I hate that I couldn’t change that.
I’m sorry that being in a wheelchair made your life isolated at times. It was hard to visit people. It was hard to go places. Some people didn’t know how to talk to you. But some did. And some helped you get places or get you unstuck or lift you into the stands at the races or give you a push when you needed it or even pull your vehicle out of the ditch, while you were still in it, when you got a little too adventurous on a gravel road. I don’t know who all of you are but I am incredibly grateful for you, none-the-less.
I’m sorry that your catheter would come loose and leak. How humiliating. I’m sorry it ruined many activities or at best, cut them short. I’m sorry you couldn’t do something as basic as going to the bathroom like you were originally designed and dealt with that frustration multiple times a day, every day, for 28 years.
I’m sorry that doctors couldn’t or didn’t do more for you 28 years ago. I’m sorry that when you first went to a local doctor, he told you that nothing was wrong and to go back to work when you had trouble walking and standing, only to be LifeFlighted to Des Moines a few weeks later. I’m sorry that all of your doctors at that time either didn’t know what they were doing and inadvertently made things worse or did know what they were doing and took advantage of you because your case was rare and interesting. Negligence? Malpractice? Egos getting in the way? Whatever it was, you lived with it for the rest of your life. And so did everyone that cared for you.
I’m sorry our parents were put in this terrifying, foreign position but they did their best to get you to the right places and do whatever they could to help you and give you the best life they could, within their means. They yanked you out of Des Moines hospitals when it was clear to everyone but the doctors that they didn’t know what the hell they were dealing with, put you in their car and drove you to the best we had, Mayo Clinic. Mayo had expertise and resources. They also had a lot of doctors that were curious about your case; your body and brain and what was going on with it. They talked you into procedures that were not in your best interest in the rare time that our parents were not present, and as it turns out, not able to protect you from those tasked with caring for you. I’m sorry our parents returned from a few days at home to find that you had had an irreversible surgery done to your spinal cord, that the doctors had gotten your permission after telling you that you’d never be able to walk again so you might as well let them see what was going on so that it might help someone else someday. And you signed the consent because you believed that it was the right thing to do. Is it a coincidence that Mayo Clinic lost all of your records? I’m sorry I was only 15 and didn’t have a better understanding of what we could’ve or should’ve done, legally.
I’m sorry that your latest wheelchair would sometimes fall apart when you were out and about. How terrifying is that? I don’t know but the fact that you couldn’t trust it to be dependable was scary, infuriating and heartbreaking.
I’m sorry that confusing insurance issues dominated so much of our time. I’m sorry that your medications increased and became difficult to manage. I’m sorry that you endured so much time, flat on your back, in hospital rooms with nothing more stimulating than a tv, dozens of surgeries and months-long recoveries in an effort to patch you back together when your skin and tissue broke down. I’m sorry that during that time you had to rely mostly on interactions with the nurses and me for your human connection. I can’t imagine how alone you must’ve felt. You had some visitors but when you’re in the hospital for months on end, those visits feel few and far between.
I’m sorry for the physical, emotional and financial burden that all of these health issues placed, to varying degrees, on our whole family. There is no way I can describe the extent that it affected all of us because I don’t fully understand it, myself. It shaped us, left wounds that will never heal and sometimes just exhausted us.
I’m sorry that you smoked. It was the single most impactful thing that affected your increasing health issues but you loved it and identified with it. It was the friend that was always there, that didn’t judge and didn’t tell you what to do. I’m sorry you could never realize the connection between some of your most frustrating health issues and your ongoing, long-term relationship with cigarettes. I’m sorry that the money you spent being a 40+year smoker could’ve been used for something more productive. I’m sorry you felt like that was more important than anything else. It likely caused the pulmonary embolism that was your official cause of death and took your last breath.
I’m sorry that you were developing cognitive issues that we couldn’t fix and that at times you were confused and scared. I’m sorry that meant many panicked situations for all of us. I’m sorry I couldn’t provide more comfort and stability during those episodes. I’m sorry that your health issues were escalating and we were running out of options to address them.
I’m sorry that the last years of your life had so many doctors, hospitals, nurses and ongoing attempts at fixing everything up that seemed to be going wrong and eventually just getting your basic needs met. I’m grateful for your home health care team that was in the trenches with you, sometimes on a daily basis, to keep you going with whatever you needed. They went above and beyond their duties. They cared deeply for you, not just as a patient, but as a person. They are the unsung, behind-the-scenes heroes in this situation. Beth and Ashley, thank you isn’t enough. You fought for Mike and were his lifeline to staying in his home which was so important to him.
I’m grateful for your friends “in the building” and the sense of community you had there. There were always folks around to chat with, maybe play some cards with and even watch out for you. They cared and we know it.
Your struggle is over but our grief is not. I grieve not only for your death but for your life. 28 years of accumulated emotion is coming to the surface. It’s been waiting for permission to be acknowledged and to be felt. There are many lessons to be learned from your life and I’m trying to see them. You found happiness and laughs in the simplest of things and the smallest of spaces. I will remind myself of that.