Surviving Cleveland

(I began this several years ago, it is my story, well at least the part I’m willing to tell.)

Surviving Cleveland

 

Many times I have heard people say everything happens for a reason. I have heard others call in Karma as the great mediator of life’s events. These things I do not truly grasp or hold much confidence in any longer.

I am no one you have ever heard of nor am I some well-educated scholar with a new philosophy that will change your life. I’m just a guy who’s been beat up a bit by the occurrences in my life. I think I am writing this more or less for my sanity. Writing has always been a way for me to create physical renderings of my inner demons. I forget the bad to a point where it’s like all the “bad” that happened didn’t exist. I guess this can be a good survival tool but from what I know of psychology repressing bad experiences is not a healthy means of coping.

Then: I was one of those people who never stopped talking. I loved to learn and would become fascinated by the oddest things. I enjoyed it and happily referred to my behavior as “nerding out.” Susie used to pick on me for it but she seemed to enjoy my ravenous ranting on whatever new topic I was all wrapped up in. She always made me feel so right and so loved. I will talk far more about my Susie later I am getting ahead of myself. I wasn’t always but I had evolved into a hyper-motivated person. Just about everything I did was for the betterment of mine and Susie’s life.

Now: I am withdrawn and I find myself putting forth an effort to have even the simplest conversations with people. I feel rude for this because I sometimes find it hard to keep up with what’s being talked about. All the many things I used to get so wrapped up in annoy me now. I feel anger because I think of all the time wasted learning and doing my “nerding out” activities when I could have been spending more time with the people I love. I am now anti-motivated. I have gone a very long time when just getting out of bed is more than I can bare. Some days I feel that stubbornness is the only thing that allows me to do anything.

“I don’t understand how you haven’t killed yourself,” this was recently asked of me by someone who loves me. She was referring to the events of the past few years and I didn’t know how to answer. At the time I still had hope. I suppose that’s why. I still had love in my heart and somewhere deep inside a desire to do more or better depending on what day you asked me.

In conclusion, I am writing this because I never want to forget a single wonderful, horrid, beautiful, or heart breaking minute of it. I will leave this intro at this. I have only ever loved two women in my life and if you choose to continue I will tell you about them.

[This I began long ago but I would become so mired in despair as I began to delve into the recesses of my mind I’d ultimately ramble on for five pages then delete the results. This is something I repeated numerous times. I have sent no less than fifty pages of my lyrical meanderings to that great recycle bin in the sky. So now it’s years later and that last sentence above needs a slight rewrite. “I have only ever loved three women in my life and if you choose to continue I will tell you about them.]

Part I My Susie

 

I have a past just as you do. It’s nothing spectacular and I can’t say I accomplished anything grander than getting off parole early back in 1999 because I was a model parolee. If you must know I went to prison for crimes I committed in 1991 at the ripe old age of sixteen. It wasn’t until I was in my twenties that I actually became incarcerated for these crimes. [That in itself is a story which could fill its own book.] Not to downplay the severity of my actions but that was twenty two years ago and I’m not even ashamed of it any longer. It was a stupid drunken teenage rampage and nothing more. I didn’t hurt anyone I just hurt people’s things.

I have battled with depression in its many noted manifestations since I was fifteen years old. At first they said it was “depression.” By age twenty I was labeled with “chronic depression.” It was in my mid-twenties that I was upgraded to “manic depression, bi-polar II” with a laundry list of symptoms. It was around this time that I came to live alone in this little house in the middle of nowhere. It was one of the most peaceful times of my life. I worked only two days a week twelve hours each day on Saturday and Sunday.

I sometimes went weeks without seeing people save for the days I worked and I loved it. I would write when I wanted, I would fish, sleep, work in the yard, or just clean the house. I was so relaxed during this time. Things had been coming to a head for so long that I needed that long break. It was wonderful. I actually kept a normal schedule at this point in my life. I was up early I slept at a normal hour. I found the solitude to be very therapeutic. I got a great deal accomplished during the course of a day. I didn’t have any issues with depression or anything of the sort until many years later.

After a time I ended up moving and changing jobs. I decided it was time to get back into living life and I had a plan. I got a great job working for a friend of mine and actually moved out to his place for convenience. We were replacing carpet and vinyl floors in motels up and down the east coast and Midwest. It was well paying and I was planning to move to another state once I had enough money saved up which wasn’t going to take long and then it happened.

It was April 7th 2006 we had been working for weeks in and around Cleveland Ohio and we were exhausted. The weather had been horrible the entire trip and we needed to relax. So we went out one night after we had finished for the day and that’s when it happened. That’s when all my plans got smashed. That’s when I met her, my sweet, shy, quiet, beautiful, Susie.

I was nearly asleep on my feet sipping a jack and coke when my buddy tapped me on the shoulder as I turned I heard him say “this is Jeff.” I looked down into her eyes and at that moment I knew this was the woman I was going to spend forever with. I never believed in love at first sight or any of that but I’ve learned as I’ve grown older you don’t have to believe in something for it to be true.

We spent every moment we could together. I was moving from location to location as my job demanded and each day when I was finished I would call and she would be there to pick me up. Each morning she would drop me off at 7am before I had to work again. It finally happened our work took us to Toledo and it just so happened to be on a Friday and she drove all the way there so we could spend the night together. We were so very happy. I had never experienced anything like it. I was 100% in love with this woman and she was in love with me. I didn’t get to see here for a week or so after that. Not until the next trip. It just so happened we were driving through Cleveland and my buddies new I wanted to see her so they dropped me off and let me skip the Michigan leg of our trip. I was so happy. I loved those guys for that, and so did she.

It was her birthday and I got to be there with her. She drove me to North Carolina shortly after and I got my things and came back with her. It had only been weeks but I felt like I had known her my whole life. She made me feel so good about myself. She was what I had been missing my entire life but I didn’t realize it until I found her.

I won’t say our relationship was perfect it wasn’t at first. We had some rough times. I am a little hard to handle. She had been through a horrible relationship and had a hard time trusting. She later told my mother that she felt guilty because it took her two years before she fully trusted me.

[So I say to you dear reader, be wary of how you treat people

because if you hurt someone enough you can

 negatively impact every relationship they will ever have.]

 

In contrast I dole out trust like I’m trying to get rid of it and that has caused me nothing but pain and heartache. She was the exception. In all of our time together she never once hurt me. We had nearly five years together and I think we averaged about one argument a year. Once we had been together a few years then yes I can say we had the perfect relationship. I looked forward to coming home to her and I missed her when she wasn’t there. It was true happiness.

With her by my side I started college working on two separate Networking degrees and at this I excelled. With few exceptions, I had excellent grades. I’m not much for algebra I am afraid to say. I made the Dean’s List and I saw her watching me as the Dean handed me the award. It was one of the proudest moments of my life. I would have never made it that far without her by my side. She was truly a magnificent woman. She was a giving soul without equal. My God I loved that girl so much.

We always had the neatest looking house. Halloween decorations were up year round and our eclectic taste of décor. I always felt so at home. Whenever we moved the first thing I did was hang her wooden spider in its web in some visible corner of the new living room. This always made her smile. I would say we’re home now and plop down somewhere only to be run back out to the moving truck to unload the rest of our things.

It was October of 2009 when the headaches started. Susie had three appointments with her doctor and each time was prescribed an anti-biotic which did nothing to ease the pain. Finally she was referred to an ENT and was quickly diagnosed with a polyp with no real testing just a brief exam lasting maybe two minutes.

The polyp removal surgery was done the following week I took her home. She was in a tremendous amount of pain. She called the doctor’s office who assured her this was perfectly normal but I knew better. She was not one to complain of pain even when she was hurt. I was getting more and more worried.

The Sunday morning following the surgery she yelled for me when she woke up. She was in tears and said my eye is messed up. We spent three days in the hospital affiliated with the doctor who performed the polyp removal surgery but were finally told by a nurse that we should go to the Cleveland Clinic because they didn’t know what to do and no matter how much of the pain medication they gave her they couldn’t ease her suffering.

A few days later the head of the ENT department at the Cleveland Clinic Dr. Knott, performed surgery on my fiancée. He and the other doctors saved her life. The problem was she never had a polyp. She had cancer and the “polyp removal surgery” punctured a hole in the rear of her nasal cavity and caused the protective fluid around the brain to start leaking out. That’s why she was in so much pain.

Susie was far tougher than I’ll ever be I can assure you of that. She endured weeks upon weeks of radiation and chemotherapy. The type of cancer she had was Rhabdomyosarcoma. This is a rare childhood cancer and she was the first adult ever to set foot in the Taussig Cancer Institute at the Cleveland Clinic with it. That’s saying something considering it is the number one rated cancer center in North America.

I have written about her struggle and honestly I don’t want to delve too far into that subject here. I don’t want to talk about how she died. I want to talk about how she lived. The disease changed our lives and her passing forever changed me. So yes I must mention the affliction which ultimately took her away.

We were very busy creatures her and I. She worked for a large bank’s processing center there in Cleveland. She for the most part liked her job. She had been there for several years before her and I met. She had two cats, Punkin and Gobby, of which I am highly allergic and a dog named Roxy whom thought she was a cat. The cats spent so much time trying to cuddle with Roxy that I was allergic to her as well.

We tried every remedy and every allergy pill on the market and finally I went and saw an allergist. The shots were the answer and I was all for it. She decided to take the cats to her mother’s instead. That’s how much she loved me.

In the beginning I was having trouble finding a decent job so I started working at a local convenience store third shift. The hours were horrible and we were apart a great deal. We decided we were going to move to Maryland where I got an awesome job and went ahead as the advanced party. She was driving down on the weekends interviewing on Mondays using up her vacation days. The separation was rough but by some twist of fate I injured myself pretty significantly about three days before I began my new job.

I was told to stay off my foot for months. I couldn’t because we were trying to get relocated and part of that required two incomes. I worked injured as I was for over three months and by the time I threw in the towel, [Susie told me to come home so she could take care of me] my right foot had changed to many colors and had swollen to an unnatural size. It was green and purple and yellow and some colors I can’t begin to identify. I walked with a limp for over two years. Even now all these years later when I am tired or have been on my feet too long the limp creeps back into being as if it never left.

About a year and a half after returning to Ohio I enrolled at Cuyahoga Community College. In the beginning I had two jobs. I worked as a custodian at the Berea Children’s Home and I was a bouncer at a local bar with a bad reputation. It was a busy existence but I did truly enjoy our life together. After three or four months I let the bouncing job go. It was taking up far too much of our weekend.  My weekdays began at 6:30am and didn’t end until 4:00am. I was going for two Networking degrees as well as a minor in Literature. We only had one good solid “us” day a week but we made it work.

[I shall break for now but I will return to add more in due time. I take the writing of this slow because it tears at my heart strings far beyond anything else I have ever written. Thank you for your patience dear reader. This is the literary equivalent of me moving my own personal mountain of doubt and remorse. That mountain is all my fears come to pass, my nightmares realized, and every imaginable “WTF!” one can imagine…]

           

Love and Cancer

Love and Cancer

            Ours was a love ripped straight from the pages of a romance novel. If you don’t believe in love at first sight then I am here to tell you it exists, albeit rare. I imagine most that venture down such an uncertain path may end in less than desirable circumstances. If it were like that for everyone every time I suppose it wouldn’t be so special and indeed this was something I had never encountered. Yes, this was something special and as terrifying and alien as it was I found myself committed from the first moment on.

I was on the road working when my life changed forever. My buddies and I had experienced a more awful than usual workday and went out to relax and maybe blow off a little steam. I had been nursing a jack and coke for nearly an hour lost in my own exhausted thoughts when I heard my friend say “and this is Jeff.” I turned around and looked down into her eyes. At that moment the world ceased to exist. There was only her. I knew that I was going to spend the rest of my life with this woman. I was powerless to do otherwise.

We spent every moment we could together while I was working in and around Cleveland where she lived. It was April and it was still very much winter there. I remember it like it was yesterday. When the time came to move on our parting was unbearable. I was home only a few days before we were headed back out to Michigan. It was her birthday and as a surprise to me, or maybe because I wouldn’t shut up about her, my buddies dropped me off and I skipped the Michigan trip and spent her birthday with her.

That weekend we drove all the way to North Carolina picked up my things and I moved to sunny Cleveland. Jumping in to a relationship as we did can be ill advised but her and I both knew this was something that would last. We were each other’s always and forever. We had a few hiccups here and there but there never arose an issue we weren’t able to compromise on.

For all intents and purposes we had the perfect relationship. We did for each other as any healthy couple should. She made more money than I did because I no longer worked for my friend’s company. I took whatever jobs I could find. We never fought over money, that’s something her and I adamantly refused to do.

After we had been together for two years I injured my leg bad enough that I walked with a limp for nearly three years. I was advised to stay off my leg for an extended period so we made a plan. I would attend college and work part time and she would work full time and go back to school part time when we had enough money saved. This made for long weeks and it cut into our alone time but it made the time we did have even more special.

In January of 2010 she was diagnosed with an extremely rare form of cancer. I do not mean to say that some other type of cancer would have somehow been better but at least they would have been able to provide a prognosis. We were both very grateful that the Taussig Cancer Institute at the Cleveland Clinic was so close but to hear the head of oncology at the number one ranked cancer institute in America tell us that he had never seen this before was a bit disheartening. Rhabdomyosarcoma is an extremely rare childhood cancer. My Susie was the first adult to ever be diagnosed and treated at the Taussig Institute for this disease. Yes the doctor had seen Rhabdomyosarcoma in children, but they had treatment options and could give an educated prognosis.

When it came to Susie everything was new. We were warned that the treatment for such an aggressive cancer would be devastating to her body. We were told that children can handle far harsher treatments but she was 33 at the time and the effects were far worse than we had imagined even with the doctor’s warnings. They were in no way overstating the truth.

Just after her diagnosis Susie instructed one of her brothers to tell me to leave. She told him “I don’t want to ruin his life with this.” The fact that I am writing this account should let you know I did not in fact leave. Her main concern through everything was always me.

I was saddened to find out from the chemo nurses that in many cases when a woman is diagnosed with cancer that the boyfriend will leave. I was only her boyfriend and not her husband simply because I was in college and I would have lost my grants if we had been married. I think that is what encouraged me to write this retelling.

When the cancer first surfaced it caused significant damage to the nerve cluster behind her right eye so she was forced to wear a patch. Susie was very independent, with the damage to her eye she was no longer able to drive and even if she had been able the treatments rendered her nearly immobile. Losing her independence was a terrible blow for her. I did all I could to make the transition go as smoothly as possible.

She was terribly intelligent and understood each and everything that the doctors said. In retrospect it may have been easier had she not been able to grasp the circumstances. It took a great deal of effort to get her to relinquish many of her day to day activities because my girl was stubborn and even in that state she tried to take care of me.

It was heartbreaking watching someone so active being confined to a bed nearly all day every day. I learned a few things over the next seventeen months some may find helpful so I type on.

The first and most important thing you need to remember when taking care of someone with a disease as severe as this is that no matter how hard it is for you it is far worse for them. The second thing is equally as important as the first. Love them. Let them know they are loved. Smile when it hurts. Be the same person you were before the illness took over. Their world as well as yours will be forever changed and flipped upside down but you as the caregiver must give a sense of stability. This peace of mind is as important as the surgeries, chemotherapies, and the radiation treatments. A positive attitude is paramount to recovery. If they see that you’ve given up then why should they keep fighting? You MUST be a trooper. If you need to fall apart do it out of sight.

When it hurts too bad to speak, laugh. When you’ve been awake for five days and can’t bear to think, be funny. There will be times they may get angry or excessively sensitive. Do not react, because you, their spouse, the love of their life, their partner, have now become their attendant, their nurse, their guardian, and their caregiver. This would be hard for anyone to accept so allow them to adjust in any way they see fit.

Be prepared. “Be prepared,” a very simple statement but prepared for what? The simple answer is anything and everything. Wal-Mart or CVS should definitely be one of your first stops. The aftermath of radiation and chemotherapy treatments can be very unpleasant and it is imperative that your home be disinfected on a daily basis due to the fact that chemotherapy decimates the immune system.

Here are a few things I recommend you have in your home: Non-scented disinfectant, (scented products can cause nausea) non-scented laundry detergent, hypoallergenic baby oil, Vaseline, examination gloves, surgical masks, a thermometer, a personal blood pressure cuff, lots of comfy pajamas, Ensure, (for when the nausea is bad) plenty of wash cloths and towels, extra pillows, extra blankets, ice packs, a heating pad or electric blanket, a box fan, an Edenpure heater, (these heaters cost a bit but they do not dry the air in the house and are safe enough to be placed close to your loved one without the risk of burns, they blow a steady stream of warm air) hand sanitizer. If you think you might need something, buy it. If you buy too much of something and end up not using it, donate it. It will not be a wasted purchase.

If you and your loved one have animals in the home it is perfectly safe to allow them to remain as long as there is no adverse reaction. Having her babies around did Susie a world of good. This however means that if you have dogs that potty outside they must be kept clean. I’m not assuming your pets are nasty but the hygiene regimen for your pups needs to be monitored on a daily basis. I washed our dogs twice a week during the warmer months; I was able to be a little more lax during the winter because there were no pesky allergens to piggy back in on their fur. Roxy couldn’t stand it but Frank always had a blast in the tub. I’d give him a bath and he’d give me a shower.

As Susie’s condition progressed we went through situations and circumstances no one should have to endure but the simple cruel, unjust, and heartless fact is, it happened. If you find yourself in this place as the caregiver to the person you hold most dear don’t succumb to the despair it offers. Grasp on to the hope and the love you feel and do whatever it takes for as long as it takes. In the end whether your husband or your wife survives or not you’ll always know that at the hardest point in their lives you were there and you did all that you could to get them through it with their dignity and their self-respect.

The night I met Susie was a karaoke night in that bar and I, a man with crippling stage fright, exhausted from working three weeks straight in the frozen tundra of Ohio, got up on that stage and sang my heart out to her. The last night I spent with her I sang her that song again, Feel Like Making Love, by Bad Company. I told her everything I wanted her to know and I like to believe she heard me. I played her all her favorite songs then I kissed her goodnight and I told her she didn’t have to fight anymore.

She left this world the next morning and I’ll never forget that day as long as I live. It was the brightest day I had ever seen in Ohio. The sun seemed bigger and brighter than on the hottest summer’s day but there was three feet of snow on the ground. Don’t feel sorry for me, it’s not why I wrote this. If anything be envious. I was blessed with five years with the most amazing woman I have ever met and she treated me like a king. I didn’t get to spend the rest of my life with her, as I had hoped, but I did spend the rest of her life with her and despite the pain and inevitable conclusion we were happy and we were still very much in love.

-JM Vogel

susie_jeff
My Susie and me. Spring of 2006 We were both asleep on our feet in this picture, but her lifelong best friend invited us over and we didn’t want to disappoint… 🙂