The following post was meant to be about the ALS walks I’m doing with my niece and her husband (and maybe hopefully some other family members) in memory of my brother, Mitch on September 21st in Midland, MI & October 5th in Toledo, OH. We are raising money for ALS research. But… as often happens with writing, something else wanted to be said – but, I think this post is actually quite relevant to the walks and to why you might want to consider giving to such an important cause as ALS research. And if you are so moved, I encourage you to donate to our team (the PMAs – you’ll understand the significance of the name if you read the whole post) and find out how you can join either of the walks. http://webmi.alsa.org/site/TR/Walks/Michigan?px=3892533&pg=personal&fr_id=9220#.UilOyOBT-9o
Thanks for reading! Namaste.
This blog was supposed to be about cooking and eating with love. It was supposed to be a little slice of my mother’s heaven where she and I figured out together how to heal our bodies with food and fitness. I’ve gotten slightly off track, dear reader, and I’m hoping you don’t mind too terribly much. Sometimes a kitchen gets messy and crowded. Sometimes there’s no food, just two small snifters of blackberry brandy and soft, sad voices talking late into the night. Sometimes that talking is the only nourishment you need. It’s still MoJo’s Kitchen. We’ve just turned the music off for the time-being so we can quietly find a place to put everything. Thanks for still reading. Vaya Con Dios.
And now... "The Story of My Brother's Life"
dedicated to my niece, Ashlee Joyce
Ten year’s ago I applied to teach at a community college in the middle of Michigan. Delta College sits between Saginaw, Bay City and Midland. I was born and raised in various parts of Michigan but these were always drive-by towns, towns I saw on signs as I went to or from the Detroit area or to or from “Up North.” For me, this was nowhere – except, it was a two and a half hour drive from Frankfort, Michigan where I lived for the first seven years of my life and where my brother Mitch stayed when my parents moved us all down to the suburbs of Detroit. Mitch was still in high school when we moved and he was on his own and supporting himself at a very young age. As soon as I graduated from high school (I was the baby so it was empty nest time once I was gone) my parents moved back to Frankfort and there they stayed until the end. So, even though I am now what my brother Mitch and my nephew Tyler would call, a “Lakey,” I do have deep connections to Frankfort – deeper than the casual tourist.
Ten year’s ago, when I applied for this job at Delta College, my deep connection to Frankfort and to Michigan was that my brother Mitch had recently been diagnosed with ALS. My son had only just been born and we were still living in Reno, Nevada when I got the call from my mother. Mitch has been diagnosed with ALS. She told me they gave him four years to live. She told me Mitch and his wife had visited Mayo Clinic and had decided to forgo the mainstream medical treatments for ALS because they had done some of their own research and talked to some long-time survivors and alternative therapies seemed more successful. She told me Mitch was selling his businesses and taking up Yoga. This made me laugh. Yoga? Mitch? Hunting, Fishing, Beer Drinking Mitch? Are you sure? But he was and he did and he lived and survived with his disease for almost 10 years after being diagnosed.
I graduated high school and left my parents home at 17. I divorced myself from my family name when I married my first husband at the age of 19. With his help, I left Michigan and got far far away. We lived in Vermont, in Poland, in Chicago and New Mexico. While we were in the Peace Corps together, we traveled everywhere we possibly could. When we were stateside, we took long road trips – even went cross-country once. I think we saw all but two of the 48 continental states together – but I can’t remember. Maybe I saw some of those on my own, after the divorce. After my divorce, I lived in Boston – met a guy – moved to Reno – had his baby – moved to New Hampshire to live near his family. While we were living in Reno, Mitch was diagnosed. While we were living in New Hampshire and this guy whose baby I had asked me to marry him, I realized I needed to be close to my family again. I wanted a home. I didn’t think I could really be of any help. I didn’t think I even really mattered to them but I just wanted to be close to Mitch and his family.
When my mother called me in Reno to tell me about Mitch’s diagnosis, she said, “I don’t think I’ll go down there [meaning, to Mitch’s house – about a mile away from her own], I don’t know if he really wants me there.” I said, “Mom! of course he wants you there! You’re his mother! Anybody would want their mother at a time like this!” Again, my mother’s insecurities and self-loathing were astounding, deep-reaching. She never fully accepted or realized the weight a mother’s love carries for a child. But, I don’t say this to blame her – because I take this same thing for granted all the time. I say things I shouldn’t to my kids. Get annoyed with them when they won’t go to sleep. Tell them to stop crying. I don’t always make the wrong choices as a mother but I’m sure I make them as frequently as my mother did – and I wish that were not so.
I explain all of this because as I applied for this job and went through the phone interview and the face-to-face interview and the waiting for the call, I kept thinking, “maybe I shouldn’t go back to Michigan. I don’t know if anyone really wants me there.” I worried that I wouldn’t know how to be a real Aunt to my teenaged nieces and my young nephew. I worried that my brother and my sister-in-law Beth wouldn’t want me around. And then, I’d think about what my mother said – about how it was the exact same insecurity. And, I told myself to shut up. You don’t go to be near family because they want you or don’t want you or like you or don’t like you – you go to be near them because they are your family – and all that bullshit of judging people or worrying about being judged by people just doesn’t matter when your family is faced with this kind of diagnosis. The truth is, it shouldn’t matter at any time – but it’s impossible to deny that it doesn’t matter at a time like that.
So I got the job and I came back to Michigan and I made it my home. And for the last almost nine years, my brother’s ALS, though apparent, was not a primary concern of my life because he never lived like he was dying. He lived like he was living. And, at first, I was still a terrible Aunt. And, at first, I still suffered so much from those insecurities my mother handed down to me that I was scared to visit him and his family. I didn’t want to be a “bother” – just like my mother would always say. But I kept trying. I kept taking chances. I started hanging out with my nieces. I started visiting more often. I forced myself not to feel so awkward around Mitch (the truth is, we didn’t have that much in common – at least, I didn’t think so at the time – and, he was 11 years older than me). We started actually hanging out on our own together (this might sound strange but hanging out one-on-one with someone in a family as gigantic as mine doesn’t actually happen that often unless you purposely seek it out). And, in the past several years, we got close and he began teaching me things I really needed to learn. And, I wanted to return the favor…
so, one day, I gathered up all my courage – because sometimes it’s so hard to say the simplest thing to someone whose love you want so much – and I asked him if he’d ever want me to write his life story. God, I felt so stupid asking. My writing is something I have always avoided discussing with my family. It makes me weird and “artsy” and worse yet, it makes me “an intellectual snob” or at least that’s what my mother called me more than once. I’ve just always felt like it made me not fit in. So, I expected him to roll his eyes or make some sarcastic remark. I braced for it. But he didn’t. He said, “yeah, that’d be nice.” And we talked about how we could get together on Friday afternoons every once in a while to talk so I could start taking notes. And it was a plan.
Then, it never happened.
I was busy. He was busy. He travelled a lot. I worked a lot. I had the kids. Etc…etc…etc….
But in the end, it was my fault that it never happened. I needed to make time for it to happen. And, I didn’t. I’m so sorry about that.
Mitch’s recent death was preceded by two brief hospitalizations. The first time he came home from the hospital, I asked him if he wanted me to stay with him in his home, along with the several other family members who were already there, or if he would prefer more peace and quiet. I genuinely wanted to know his preference. I totally understood all the people around being way too much on him. Also, none of us knew what this hospitalization meant. The way he had been surviving, he could have continued on surviving like that for years for all we knew. So, I didn’t think I would be saying goodbye to him forever if he did want me to leave. And, I braced myself to not be all stupid and take it personally if he said something like, “honey, do you mind just going home and I’ll call you if I need you?” -- of course, he probably wouldn’t have said it at all like that but I was prepared for something along those lines.
Quick but important note: If you’ve never been around someone with ALS, you might not realize how difficult it is sometimes to interpret their speech because all of the muscles are weakened and it is extremely difficult to articulate with weak tongue, mouth and throat muscles. This gets worse as the disease progresses.
So, he motioned to me with his head to get a little bit closer to him. And I leaned in and gave him a kiss on the forehead and prepared for him to quietly dismiss me and he said, “I’m ready to write my book now.”
And I wasn’t sure if I heard him correctly but immediately what he had said absolutely pierced my heart and I began crying and through my tears I said, “did you just say that you are ready to write your book now?” And he nodded, biting his lip, with tears in his eyes too.
Once again, we made plans. We would start in the morning.
And there was one brief moment that next morning , in between moments of pain where I asked him if he wanted to start, if he wanted to just start a conversation. I told him I’d ask him questions or just ask him to tell me about different things. I was acutely aware that I did not want to push too hard, too far. I did not want to upset him. I know the power of writing and of storytelling. I know it’s so hard. I know it’s painful. I wasn’t sure if he knew and I didn’t want to cause him anymore pain, even if only emotional. He said, “what kind of things?” I said, “for example, I could ask you about when the kids were born or when you first met Bethy.” And he bit his lip again. That’s what he did before he started crying. And his eyes teared up. And he said something like, “it’s going to be really hard. I’m going to get really emotional.” And I said, “yes.” And he told me he would have to prepare himself a bit more for that. And I said “okay.”
But we never got the chance…
because by the afternoon, he started experiencing a different pain and went in for his second and last hospitalization and then the pain got worse and then he came home with hospice and then the meds made it impossible to talk for too long and then…
But here are some parts of the story of my brother’s life I can tell:
Family legend has it that he was once driving down a dirt road at about 40 miles per hour, with my brother Jeff after an unsuccessful morning of squirrel hunting when suddenly, he stopped the truck, said to Jeff, “did you see that?,” hopped out , grabbed his gun out of the back and ran into the woods. Jeff heard three shots. Mitch came back a moment later with five squirrels. He was a legendary hunter from then on (or maybe even before then – but since the first time I heard that story, he was legendary in my mind).
With those same “Indian Eyes” he could find Petoskey stones and morel mushrooms like no one else I’ve ever even heard of. In fact, I realize now, he was an incredibly observant man – not just of animals and stones and mushrooms but of all types of fauna and of the wind and of the sun and of water and of people’s faces and people’s needs. This is what made him so great at business but it was also what made him so damn fun to be around.
The first time I met his soon-to-be-wife Beth, I was probably eight or so. I told her I thought “Mitchy” was not cute. It was just one of those stupid kid-sister things to say, like, “eeew, my brother has cooties” and she said, “No, he’s not, your brother is very handsome.” And I thought she was weird for thinking so – but, of course, she was right.
When his daughter Ashlee was a baby, he would throw her up into the air then hold her face close to his and he would lick her cheek, like he was actually an animal. I remember thinking how totally bizarre. I also remember realizing then and there that the men in my family are soft as butter on the inside (but that’s a story for another time). It was so sweet. He was so loving.
My mother told me that when his son Tyler was born, Mitch had to pull over on the side of the road on his way home from the hospital because he was crying so hard. This is a story that Mitch himself or Beth must have told my mom. I have always wondered whether he cried because he was simply so happy and proud or if he was also a little anxious about being a father to a son. And I suspect it was both.
He took his daughter Brenna out of school in 12th grade (I think?) to hunt wild Turkeys. He was ridiculously proud that she could handle a gun and made endless jokes about how the boys would know now not to mess with her (as if they didn’t know it already).
In the hospital, after the doctor came in to give him his choices, Mitch asked us to help him get his legs into a kind of crossed-legged position. He told us, “I want to try to meditate, if I can” and he closed his eyes and he meditated. We left him to it. And I couldn’t stop thinking how emotionally strong one has to be to respond to the news that death is imminent with the simple desire to meditate.
And, in the hospital, that last time, when he had a nurse or two that didn’t seem too happy about being there, he asked us to make a sign for his wall that said, “Positive Mental Attitude: If you don’t have it, stay out!” He insisted that everyone smile until the end. He insisted that everyone have a good time. It occurs to me now that maybe he did this more for us than for himself.
A couple of days before he died, when he couldn’t handle all the visitors coming to say goodbye anymore, he said to tell everyone, “Don’t cry. I don’t know what’s going to happen but today is a good day.” I know!! I’m writing this and I’m thinking, you’re kidding right? He couldn’t have really said that right?? But he did!
My brother Mitch was not perfect. When people die, it’s the first thing we do, right? We deify them. And, maybe that’s how it should be. Maybe we need to spend some time appreciating the godliness and the light that has gone away with them. Maybe this is the moment – the only moment – that we truly appreciate what they gave us.
And later, we remember how they hurt us occasionally, how they made choices we didn’t like, how they sometimes even seemed cruel. None of us are always our highest selves. We couldn’t be. And that must be part of grief too, forgiving our dead for not always having been their highest selves in life.
But for right now, dear reader, forgive me, I can only marvel at the highest-self of this man because only the absolute highest-self could say, in the face of his own death, to the people he loves, “today is a good day.”
He didn’t need anyone to tell his story. The life he created was his story. He was a happy man.
“nothing is better than to live
a storyless life that needs
no writing for meaning –
when I am gone, let others say
they lost a happy man,
though no one can tell how happy I was.”
-Ha Jin (from “Missed Time”)
He knew exactly what kind of message he wanted to leave the world with. He knew exactly what story he wanted his life to tell. We lost a happy man. Though none of us can tell how happy he was.
“I don’t know what’s going to happen but today is a good day.”
“Positive Mental Attitude. “
Amen, Brother. Amen.