Today, Bob's family in Wisconsin are holding a "Celebration of Life" in his honor. I am not there.
I am not there because I am needed here. Boomer is nearing the end and will soon join Bob on the other side. The vet has given me five days worth of medication and if Boomer doesn't improve, I will have to make a tough decision. I tell you, it will be so very hard to lose "my two blonde boys" so close together. Then there's Bob's beloved Zenith, who is touch and go, on daily meds and IV fluids. I have never seen a cat grieve before, but believe me, they do. And then there's Ripley, who used to sleep with Bob every night. Ripley, who still sleeps on the empty hospital bed and pulls his fur out in chunks and had to get a steroid shot to calm him down. I cannot abandon our little family in their time of need. Bob would not have wanted me to.
So I wrote a letter to be read at the Celebration. And a dear friend will read it for me. Here, I share it with you.
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| Bob & Zenith |
A Tribute to Bob
My heart is breaking, but truth be told, it’s been breaking for over four years, so the feeling is not so unfamiliar as it is different. Different because now the hospital bed in the living room is empty and the wheelchair is abandoned in the corner.
It was four years ago, in October 2010, that Bob went into the hospital for carotid artery surgery. His carotid arteries were, we were told, 95% blocked and the doctors told us that if he did not have this procedure he would soon suffer a massive stroke.
Ironically, the very procedure that was meant to prevent a stroke, caused a stroke that night, while Bob was in ICU. Bob had been left in the care of a RN, an new employee still on probation, who had no ICU training, was supposed to be supervised by preceptor, but wasn’t. When Bob cried out for help, this nurse told him to “settle down, settle down” and pumped him up so full of morphine that he blacked out. This nurse, all night long, continued to document Bob’s deteriorating condition on the chart, but never called the doctor.
I would learn these details later, through medical records and lawsuit depositions and from Bob, himself, when he was able to speak again.
Back then, it was I who found Bob in his ICU bed, at 9:00 a.m., unable to speak, unable to move, with a look of sheer terror in his beautiful blue eyes. It was I who called for a doctor. And though the doctor “rushed” Bob into emergency surgery, it was 11 hours too late. Bob had already suffered massive brain damage. He almost died that day. In the following weeks, he almost died several times. At one point, during that long hospitalization, the doctors took me aside to tell me gently that it was time to take Bob off life support. But I just couldn’t. And somehow, Bob pulled through. The doctors called him “the miracle man”.
I know this service today is a “Celebration of Life”, but one cannot celebrate Bob’s life without remembering the tragedy that befell him and his last four and a half years. I know today folks will be reminiscing about good times and fond memories and believe me, I have many fond memories too.
Fond memories like our first date, on a bitter cold Wisconsin night in January of 1994, when we met after work “for a drink” that turned into an 8 1/2 hour non-stop conversation. How at the end of the evening, Bob pushed me up against the wall and said, “Where have you been? I’ve been looking for you my whole life.” How I laughed and said, “I’ve heard that line before.” Though truthfully, I hadn’t.
Or how he proposed to me so many times and I turned him down so many times, that he finally gave up and told me that, next time, it would have to be me doing the proposing. And I did.
Or how, when I told him I was going to keep my maiden name, he asked if I would at least consider hyphenating my name. I told him that I didn’t think it fair that women had to change their names when men did not. And how he shocked me, a day later, telling me that he had been thinking about what I said and, he agreed, it wasn’t fair and he wanted to know if he hyphenated his last name, would I hyphenate mine? because he wanted us to share the same name so everyone would know we were “a couple”. I couldn’t argue with that compromise.
Recently, I went through our photo albums, trying to dig up some memories that I could share here today. I found myself, first, smiling sadly, then giggling, finally just cracking up. Because there was Bob, picture after picture, hamming it up. He was the guy with his arm flung out dramatically, his hand, palm up, in that gesture that said “I’m totally cool”. The guy in the silly straw hat, eyes crossed, tongue out. On the back of the big lizard statue, riding the thing like a bucking bronco. He was the one with the balloon animal on his head, or wearing a 1930’s fedora and aviator sunglasses, or creeping across the landscape, fingers curled, arms crooked, like a deranged ghoul.
And the photos he wasn’t in — He was the guy behind the camera. Photos of normally somber folks, thumbs in their ears, waggling their fingers. Folks with eyes crossed and tongues out. With balloon animals on their heads. With arms stretched out in that dramatic, sweeping gesture that Bob loved. A photo of my mom, pretending to choke my father, her faced turned toward the camera with a look that clearly says, “Come on Bob, hurry up and take the darn picture! This is so embarrassing!”
Bob could charm people into doing the damnedest things.
The photos also reminded me of the things Bob loved: Loud Hawaiian shirts; funky, 1950’s motels with lots of neon; hokey old roadside attractions and tourist traps, roadside signs which proclaimed things like “The Fruitcake Capitol of the World!” and the “before” and “after” photos of his restoration projects — 1930’s radios and electric fans and floor lamps. His beloved Siamese cat, Zenith, who he had trained to jump from the floor onto his shoulder, so he could take her “for a ride”. His 1973 Dodge Dart Swinger, V8, 4 barrel, 360, two-door coupe with factory air, painted emerald green with a black top, which he had named The Green Machine”. And the bumpersticker he found for it in an antique shop for $3.00 which read “Re-Elect Carter/Mondale”.
That was the Bob that most of you remember. That was the Bob I have mourned for many long years.
The Bob that was discharged from the hospital on New Year’s Eve 2010 was a changed man. A broken man. He was paralyzed. He could not walk or stand. He couldn’t swallow, had a feeding tube stuck in his stomach. He was partially blind. He couldn’t control his bowel or bladder. But the worst was that he couldn’t speak but a few words. The words he could speak, he latched onto and repeated over and over, like some kind of haunted mantra. Words like “Radio” and “Window”, over and over, “Radio” “Window” and I tell you, it broke my heart.
The hospital wanted him discharged to a nursing home. In fact, the social worker had all the paper work drawn up for admittance to a nursing home. I argued with them. Refused to sign. The doctor pulled me aside, telling me “your husband is nursing home material now” and there was no way I would be able to care for him at home. But I fought to bring him home with me. I knew his only chance for recovery was to come home.
The next 4 1/2 years would be the hardest in our lives. As Bob struggled to recover, my life changed from that of equal partner to that of caregiver.
Bob worked hard on his recovery process and I worked hard fighting the insurance company and therapists and finding charities to help pay the cost to keep Bob in therapy. And doctors told us that Bob would never breathe on his own, but Bob pulled out his own breathing tube and showed them that he could. They told us he would never walk. But Bob pulled himself up out of that wheelchair and took steps. The doctors said he’d be “a vegetable” never able to speak any sense or comprehend, but Bob worked hard at speech therapy until he was speaking full sentences and able to hold a coherent conversation. He set himself to prove the doctors wrong. Many times he triumphed. Many times he didn’t. But he never stopped trying.
For the most part, Bob spent the last four years, five months, in a hospital bed in our living room. He loved his power wheelchair, but he could not tolerate sitting up for more than a couple hours before the pain became unbearable..
Through it all, he never lost his sense of humor. He never lost his lust for life. I remember him, working hard on the Nu-Step machine at Out-Patient Rehab, breaking out in song, as loud as he could, his version of “Singing in the Rain” or Deep Purple’s “Smoke on the Water”.
Though he mourned the loss of his ability to play his guitar, Bob still loved music, he loved to sing and could sing, if not beautifully, with gusto. His favorite radio station was classic rock which he would request by shouting “Rock and Roll!” and though he could no longer dance, he often grabbed my hand with his one good hand and we “hand-danced” to the music.
Though he lost the use of his right hand, he learned to draw with his left. He drew magical, surreal pictures that he painstakingly worked on for months at time.
And he suffered, these long four years, with many medical setbacks. Post-stroke dystonia caused his neck muscles to contract and he could no longer hold his head up. His feet became curled and painful and he underwent two different foot surgeries. He was diagnosed with cancer and went through treatment. He suffered through bouts of pneumonia, urinary tract infections, sepsis. His right lung, which had collapsed during his 2010 hospitalization, never fully recovered and continued to retain fluids causing chronic respiratory issues.
But with every setback, with every new problem, Bob would shrug it off by saying “oh well” or “c’est la vie”. I don’t know how he did it, but he kept a positive attitude through it all.
One of the last things I bought for him was a blue t-shirt with the Superman logo emblazoned across the chest. Bob had picked it out, and I had laughed when he pointed to it and said, “are you sure you want that one?” Bob slapped his chest with his good hand and proclaimed, “Superman!”
Many of you know, after Bob came home, I began keeping an online journal, first to keep family and friends up-to-date on Bob’s progress, but later my “blog” turned into something completely unexpected. It became a way to reach thousands of strangers in the online stroke survivors community. Before I knew it, I began receiving messages from caregivers and stroke survivors across the country, around the world. Over the years, Bob has been an inspiration to so many people. I cannot count the number messages I received from stroke survivors who said that reading Bob’s story, seeing Bob’s dogged determination, had given them hope and inspired them to continue working hard on their own recovery. As one fellow wrote, “If Bob can do it, so can I!” Bob’s story touched so many hearts.
This past week, I have received condolences from people across the country, from Canada, the UK, from countries, I hate to say, I can’t even pronounce. From people who never met us but felt as if they knew Bob and loved him dearly. As a woman from Michigan wrote, “Know that people all over the world are mourning Bob tonight and praying for you. I hope knowing this brings you comfort.”
Bob’s last wishes were to be cremated, that I should keep his ashes and find “some real cool antique” to store them in. He also asked me to wear a locket around my neck that contained his ashes, so that he could always be close to my heart. And, at the time of my death, to have our ashes mixed together and scattered across the Gulf of Mexico. It is my intention to fulfill his wishes.
Before I close, I would like to thank the following people for their comfort and support in Bob’s final years:
Bob’s Aunt and Uncle, Mary and Dick, for your frequent visits and phone calls. Mary, Bob always called you “Crazy Aunt Mary” and I have such fond memories of you and Bob singing together on the phone. And Dick, he never forgot about those “awfuls” and “french crud” — Bob loved you both so much. Thank you for being there for him.
To my parents, Les and Carol, for your yearly visits, daily phone calls and financial support. Bob always called you guys “mom and dad”. I don’t know what we would have done without you.
And thank you to the others who took the time and expense and travelled to visit Bob during his last four years:
Bob’s Aunt and Uncle, Bill and Kathy
Bob’s Cousin, Mark and his daughter, Isabelle
My sister, Karen and her friend, Pat
My Aunt and Uncle, Pauline and Don
My dear friend and fellow writer, Jennifer of Chicago
My oldest, dearest friend (who reads this now) Lori and her husband Tim.
Those visits meant so very much to Bob.
I’d also like to thank those, to numerous to mention, who sent cards and letters and gifts and much needed cash, you know who you are.
A special thank you to Dan of Illinios who, with his church group, took up a collection to send Bob an I-Pad to work on with his Speech Therapist. It helped his Speech Therapy so much and gave him so much joy.
Thank you, also, to David, my nephew who offered to step in and become his Uncle Bob’s caregiver, if anything should happen to me. You didn’t have to do it, but knowing you had my back put me at ease.
And Chris, our dear friend, who sat so many nights with me while Bob was hospitalized in 2010 and afterwards, came weekly to sit with Bob so that I could run errands.
And last, thank you to all those who gather here today to celebrate my husband’s life. I wish I could be here with you. But my hands are full and the distance wide.
And lastly, to Bob, if you are listening, sweetheart. My darling, my love and my life, you were my Superman.
Wait for me.
