“So, you are losing your vision, AND your hearing, AND your kidneys are failing????” My TTY telephone relay operator typed this and then typed (SHOCKED INDIGNATION). Its always interesting what little tidbits TTY relay operators like to share about what they are hearing on the other line.
“Yes,” I typed, “But let’s just put vision and hearing aside for the moment, Let’s just take one matter at a time and deal with my kidneys today.” I almost told her to take a deep breath, in through her nose, out through her mouth…
She was an intake receptionistat a transplant center. She was running through my history with me and was struggling a bit to get comfortable with the TTY relay situation. It had taken me 3 weeks and several attempts to connect with her. She kept calling me directly and leaving me a voice message I could only somewhat hear. “How…I mean, how do you deal with that?” came up on my braille display and computer screen. I have had this question many times, in elevators, while at my kid’s school conferences, in all the most inapropriate times. They look upon you as some kind of scifi enigma who cannot, somehow, actually exist in the wild.
Although I redirected her at that moment, I thought in my head, “lately, not well.” My deafblindness was more of a problem for her, not so much for me. There were fixes and workarounds there. End stage renal disease could kill me. I could not just learn a new skill or a new technology to compensate. I had to trust other people. I had to get past her and actually have someone in her program say I was worthy of a new kidney and then I had to have someone else donate one. This felt almost entirely out of control. And only I would need to do these things in the middle of a worldwide pandemic. I have been struggling with this.
I have had many friends who have multiple disabilities and have gone through transplants and dialyis. I know it can be done and I can make it through. I also know that I have several advantages that many others throughout the world do not have in this type of situation. I have insurance, I am near a transplant program. I’m white and educated. I know how to advocate for myself around healthcare. This is not the end of the line for me. There is hope.
But Deafblindness does take its toll. I felt like my husband, who is a blind immigrant and my children (ages 16,16, and 11) and I had finally reached a good place. Disability is always wrought with discrimination, poverty, burn out from dealing with agencies, employers, medical people and the never ending “public.” I felt like we had reached a sort of stability at age 50 that most people reach at maybe 30 or 35. But we were here, and we had worked hard to get here by towing the line and doing all the right things. My twins would be getting ready for college soon, my 11 year old was moving along well and coming into his own. Our Adaptive Technology business was doing well. It was just about time to relax…
Then, my nephrologist of 20 years left to greener pastures at a for-profit dialysis center. Just a year ago, he had reiterated what told me all these years: That I was fine, I was doing the right things, My GFR number, a measure of kidney function, was way higher than blood tests revealed and I wouldn’t have to think about kidney failure until I was maybe 70. The second I was re-assigned to a new nephrologist, she told me that my kidneys were going to fail within 18 months or so and why wasn’t I pursuing transplant? Why wasn’t I prepping for dialysis already? Then Covid hit and transplant referrals slowed to a stop. Then here I am, talking to a transplant coordinator who can’t get over my deafblind renal disaster-ness and has (SHOCKED INDIGNATION) on a TTY call.
On New Year’s Eve, everyone was happy to say goodbye to 2020. The vaccine is here and soon it will all be over! 2021 is going to be great! NO MORE TRUMP! NO MORE QUARANTINE! Things are looking up! And of course, I feel these things, too. As a kidney patient, COVID is very dangerous for me and I’ve gone on maybe 5 trips to the pharmacy or to medical appointments since March. I’m hoping for the vaccine to come and come fast like everyone else. But still, I couldn’t help feeling left behind again. What will become of me in 2021? Will I be alive next New Year’s Eve? Will I be on the other side of this? Will I be denied treatmet because I am deaf blind? Or will I not be respected and accommodated? Will I be struggling through dialysis? The anxiety was pulling me under.
I woke up on New Year’s Day 2021 with visions of Lisa Shulman in my head. She was literally my first thought. And in thinking of her, a sense of peace and contentment came over me. OK, I sighed. I know what I need to do here. It will be OK.
Lisa Shulman was a girl I went to middle and high school with. We were always friendly but I was not in her inner circle of friends. Still, we had a few weeks in high school together where we met, wrote and talked about different things and we crossed paths in a bit of a unique way. She taught me time management. But not in the way you think.
I first saw Lisa when she was in 7th grade and I was in 8th. She was bald, wore a pink cap and had thick glasses. She smiled all the time. I don’t think I ever talked to her that year. I only heard someone say that that was the girl who will die if she gets the chicken pox. All the students and parents had recieved letters about this. If you have chicken pox, let the school know because we have a student who could die of it. I did not know she had cancer, but I knew she was not well.
I was teased a lot in middle school. I wore thick, ugly glasses and hearing aids. With poor vision and no O&M training, I walked slowly and awkwardly, looking down all the time. I was a resource room kid. Once, my social studies class played a game of Jeopardy with the clues written on the board. I couldn’t see the questions nor always hear the them when they were read. When it came to my turn, I struggled and no one helped me by reading them. Not even the teacher. Lots of the kids laughed at me and made fun of my glasses and my inability to see. When I left class, another girl came up to me and said, “Don’t listen to those kids, they’re idiots,” which I appreciated, but I knew she was going to go off and hang out with them seconds later.
But Lisa Shulman walked by and they all said “hi” to her and were friendly. I asked the girl next to me, “why don’t they make fun of her like they make fun of me?” (Not that I wanted them to, I was just fascinated by this. I had judged her to be about as different from the norm as I was at the time.) “Oh, she has cancer. You can’t make fun of someone with cancer.”
Ok, so, they draw the line at making fun of the cancer kid. But the blind kid is fair game. Got it. I thought. I didn’t get it, though. I was friendly and smiled and said “hi,” too.
I didn’t see Lisa Shulman again until I was in tenth grade. By that time, I had tried to perfect the art of being invisible. Invisibility was my protection against bullying. In the caste system of high school, I was still a resource room kid. I was never going to climb up the class ladder to be a popular kid, I knew that. But I could climb out enough to be invisible and mostly be left alone. I saw my resource room friend Joan and her friend Lenny get mercilessly bullied and teased all the time and there was nothing I could do about it. Join and try to defend her and I’m just back in the line of fire and it wouldn’t stop. But I could stay in the shadows, never talk in class, never call attention to myself and get through the day.
So, when Lisa sat next to me in Journalism class, smiled at me and said hello, I was surprised. No one said hi to me. I didn’t even realize she was the same pink-capped kid with cancer for awhile. She looked cute, healthy and had a head of teased brown hair. I was glad to see her doing so well.
Journalism for me turned into a bit of a sanctuary my last two years of high school. I was on the yearbook staff and spent a bit of time on the newspaper staff. The Journalism area had two large rooms and some smaller rooms for the photography lab and equipment. Journalism was a clique like the band kids or the drama kids, and though I was only ever on the very periphery of this group, I mostly liked them and they accepted me. I was still set in my invisible ways, but I did talk to them a bit. Looking back, I probably could have been a lot more involved with them and hung out more, but just having a safe place to hang out between classes and not have to eat lunch in the cafeteria because I could hang out there was victory enough. Lisa was on staff, too. She was a central figure in that crowd. We were friendly, but not that close.
In my senior year, I was struggling to be able to read any print at all. I could read better on a computer, but as far as print books, I had to hold them up to my nose to see them. I would hide in the photography locker rooms to read in private this way. Every once in a while a photographer would come in, step over me get to their locker and leave without raising an eyebrow. Once a photographer told me I had black ink from the book I was reading on my nose. We laughed, but it wasn’t mean or judgy. These small interactions that I still remember had meaning, because so many of my interactions were not so nice.
I was losing my vision and was going to have eye surgery. Everyone was getting ready to go off to college and were so excited to graduate and do great things, and I was being told that I probably couldn’t make it in college. I felt out of step with everyone else’s future. Mine felt like doom and gloom, like I would be a total loser. I had found out I could never drive. I had been told I needed to go to blindness rehabilitation. A couple of years earlier I learned I had kidney disease. At that time, I had no perspective or mentors or help for this. I just thought it was about to all go downhill for me. I remember laying in a hospital bed after a surgery and listening to my mom talk to my aunt about how worried she was that I was going to flunk out and never make anything of myself, and that I would end up pregnant with some loser. I remember opening my eyes and not being able to see, having lost my failsafe nose-to-book reading vision. I wondered why I was even going to college at all if I had no idea how I would read books then. But I wasn’t the only one who was not on the typical college bound path. Another girl on the journalism staff was pregnant, another girl was having significant family issues. And Lisa’s cancer had relapsed; she was going through chemo and having a bone marrow transplant.
I wanted to reach out to Lisa and do something for her, but I didn’t know how. But also she was just always surrounded by her friends and she really didn’t need me. I see now how I was probably more like the people who come around me with great curiousity about the novelty of it all. People who I call “disability groupies.” They mean well, but they get off on the inspiration of it all and don’t actually treat you as a person. Lisa was larger than life to me. I was amazed by how she could be going through all this and still have this happy-go-lucky popular social life and personality. I was occassionally at an ajoining hospital when she was going through chemo. I would sneak up to her room and try to visit her a few times, even buying her little things at the gift shop and leaving them for her. She was usually asleep in a darkened room. I would be chased off by a polite but protective nurse.
Then, I found a way to reach out to her. We had these boxes on shelves in the journalism room where we kept all of our stuff. Once, I reached into my box and found a pink envelope. I opened it and found that it was a note from Lisa to the girl that was pregnant. I guess it accidentally was put in the wrong box. The note was short, but sweet and supportive. I put the note back in the envelope and placed it in the correct box. Then I got out a sheet of paper, wrote to Lisa and put the paper in my own pink envelope and placed it in her box.
I told her some of my fears and how I admired how she handled things and how much I rooted for her even though we weren’t close. A few days later, I find another pink envelope in my box, but this time it is for me from Lisa. We communicated this way for a bit and also talked a bit on the phone and at her house. We corrosponded for a few weeks this way, and then I had to leave my senior year two weeks early and go to have a surgery. I got a card from her when I was in the hospital. And I never saw her again.
I found out later that she died in June of 1990 at the age of 19. I was devastated and cried in my little apartment. By that time, my future was much brighter and secure than it had seemed in high school. I got to have that, I was crushed that she didn’t. But I don’t think that would have been something she would have dwelled on. Because she was a Master of Time. She was able to live each moment in a way that probably stretched out 19 years into more than what most people manage in a lifetime. It isn’t one of those “high adventure, suck the marrow out of life” things exactly. It’s just being here. Right now. Right now is good enough. Right now is all there is. Right now is everything.
I don’t have those notes anymore. I don’t remember exactly word for word what we said to each other. I feel like I will get this wrong, and it is important to me that I get at least to the essence of my memories of her. But mostly, there is a feeling, and a lesson learned. And it is a lesson that I carry to this day. Many times I forget this lesson, and then, like on New Year’s Day, she comes to me. Her smiling face, her kindness, but also this feeling, this memory, this lesson.
It has to do with time management. But not the mundane kind where you make bullet journals or priority lists or “Put First Things First” of all your little daily tasks. It has to do with the kind of time managment when you really understand that you are mortal and have limited time on this planet. When you have to balance an appreciation for the past even when there was struggle and missed opportunities. And balance that with hope and sacrifice for the future you know may not be there. And balance that with living in the absolute mometnt and being present in the here and now. And knowing that everything is ok at this instant, right now and that is enough. And being there for it. Lisa didn’t invent this, of course, but she lived it so well. This is time managment on the grand scale, the way we utilize the time we are given and balance a powerful throughline between past, present and future. The known and the unknowable. The controlled and the uncontrollable. This is what we spend our whole lives trying to do, and most of us don’t do great at it or even know its power. I watched my parents talk and plan for years about retirement, only to watch my mom die at 55. I see some disabled people stuck in the past in long gone non disabled bodies, missing the gifts that are right in front of them. To balance time, past…present…and future. To know how to suspend yourself in the now and accept what is given but mold it to your needs, curiousities and pleasures, is to truly master time.
Lisa told me that when she was in school she was a high school student, so there was no reason to think about cancer. She could be 100% a high school student and hang out and she loved that. When she was in the hospital, there was plenty of time to deal with cancer. Why do it any other time? It was an AP class in compartmentalization, while still managing to keep all the compartments juggled. We talked about scholarships and college and how some people didn’t think we would make it there but she was just going to assume that college was for her, too. That is expecting the future will come, but not getting so caught up in it you miss the now. It’s knowing that life can change in and instant, and still not being afraid to live. (just today when I was searching for her on the internet, I found that she and I had won the same rotary scholarship. I could not go to the banquet they had for the scholarship because I was in the hospital, I wondered if she had missed it for the same reason, or if she had gone?) She had an entitlement that I also see in my deafblind friend, Haben Girma. Its a bright outlook that doesn’t ask if things will work out in the future, but just assumes that it is all there for her to enjoy and take full part it. We talked about past regrets. How I had pined after a guy for 3 stupid years and how confusing it was for me that he had been nice to me on occassion but that was it. (The phrase, “he’s just not that into you” had not reached the vernacular at that point in history.) Still, she saw that I joined debate for this guy, and I had really enjoyed and learned a lot in debate. (Stuff I still use to this day.) So, she said, “walk right past him at graduation and give him a smile, and don’t look back. Leave him in the past.” I did exactly that. I had a blast at graduation. I hung out with the guy who was next in line from me in alphabetical order, who I had had a locker next to for years and had never spoken to. We were laughing and joking all the way through the hellishly long granduation ceremony. The next day I moved out and started my blind rehabilitation. Three weeks later, I had a boyfriend. I was learning new skills to deal with blindness, and enjoying myself by living in the moment and having hope for the future. Almost in an instant, my life completely changed.
The ability to compartmentalize and prioritize and chunk up seemingly overwhelming things is what kind of time management skills she gave me. The ability to take the good from your past, enjoy whatever is happening in this minute or this exact second without worrying about what worst case scenarios you can think of, and the ability to just KNOW that there can always be a bright future ahead. It will be there until it is not. So don’t miss it all.
These are simple lessons. But there is the feeble attempt to tell of them like I am doing here, and then there is the living them like Lisa modeled for me. She was the first of many mentors I would have that would show me by example how to live with this kind of spirit. I see it in that first boyfriend I had after graduation, Kory Evans. I see it in my blind friend who is fighting cancer right now, Sassy Outwater. I see it in my Black Girl full of Magic Deaf blind friend, Haben Girma. I see it in my long time quadriplegic friend who lives in an adult foster home right now, Dwight Lay. I see it in my loving husband who is going through this with me right now with great patience and care, Niklas Petersson. But Lisa Shulman was the first person I knew who had it. Who was a Master of Time. She is who still lives on within me and comes to me in some of my dark, uncertain times.
So, have I earned the title of Master of Time? I don’t know. Of course I am not perfect at this. Of course I need reminding. But my life is good. My challenges have brought many rewards and kidney disease will probably allow me to meet new people and learn as yet unknowable lessons. And it doesn’t matter right now anyway, because today I have my sweet little boy to teach how to do long division and my college student teen to entertain me with his jokes and my neurodiverse and nonbinary child to test me in new ways with their creativity and dry wit and my husband who lets me literally lean on him when I can’t stand up, and my dog to hug and kiss. I am here right now and its good. And the memory of Lisa is there for me so that I truly know this.
I just thought you should know her.