The Blessings Behind the Illness, You Can Live a Positive Life With Chronic Illness
- November 22, 2016
- Theresa Bertuzzi
This weekend my staff held a fundraiser in my name to raise money for Lupus research to help find a cure. I could not have been more touched. When I found out that they were doing this to make me feel better I wept. Nothing they could have done could have touched me more. They planned a bottle drive and hotdog lunch all on their own and took care of everything. I wanted to thank them and show them in some way just how much this meant to me so I baked each of them a cookie can full of cookies and dropped them off at the event. When I pulled up with my cookies and saw all of their smiling faces standing out in the freezing cold trying to peddle hot dogs on my behalf I couldn’t contain myself and ended up crying all over them. I hope that each of them reads this blog and knows how much I love them and how much each of them means to me and it meant the world to me that family and friends pulled up and grabbed a hotdog even though the weather was terrible. It was one of the most special moments I have ever had and I can’t believe that they did that for me. My friend who owns the Barrhaven centre also had their centre participate with bottle donations and I just want to kiss every staff member from both centres and they know they better run when they see me because I will do it too. The support I have been getting from everyone has touched my heart and I get so much comfort knowing that so many people are reading my posts and each click of the like button, comment and share has me leaping off the couch in happiness and sees me through whatever comes the next day.
I headed back to the hospital yesterday for a lung test to make sure that my lungs were not compromised with the muscle weakness and happy to report all is well there. On the way out I helped push and elderly man’s wheelchair out to his waiting family and couldn’t help being thankful that I was pushing one instead of riding in one. My happiness came to a halt when I stepped into the elevator in the parking garage and realized I didn’t know what button to push. CRAP! I forgot to look to see what level I parked on. AGHHHHHH I know my friend Diane is yelling at her computer screen right now, while reading this “take a picture of where you parked with your phone!!!! How many times do I have to tell you?” I’ll tell you why Diane because you are always with me to take care of these things, when I am on my own I am virtually helpless at times. So I started at the top of the garage and worked my way down, walking the parking lot in search of my car. I desperately pressed my lock button on my remote door opener but it will only beep when you are about 8 feet away from the car so it is virtually useless as you are almost in the car by the time it beeps. After trudging my way through three levels of cars, I finally found it. I did get a few looks from people that were not very pleasant; maybe they thought I was casing out cars looking for unlocked doors instead of an idiot who forgot where her car was parked. I do have a pretty suspicious look about me and I may have been muttering some swear words and calling myself “stupid.” When I got in the car I suddenly realized, my god, I was just able to walk three levels of a parking garage without having to sit down in the middle of the pavement to rest. Yes I was panting but I did it! So I blared the music in my car and sang all of the way home!!!
Throughout this whole experience and especially after having started blogging I have had so many people ask me how I keep so positive. The truth is I am for the most part positive but I didn’t used to be that way, instead it is the direct result of having to deal with many of the situations that have come my way. I have been through a few really horrible times in my life. Breaking my leg and being laid up for 6 months while pregnant with my daughter who the doctor suspected may have Spina Bifida while having to care for two additional little ones under the age of 4 and keeping a business going. Finding out I had Lupus and dealing with the chemo, steroids, treatment and complete hair loss while taking care of three children under the age of 7 and continuing to work. When I had to deal with a business problem, which I cannot talk about here, but I can say handling this situation forever changed my health and view of the business world and was one of the worst times of my life; no it has not been a perfectly smooth ride for us even though the journey has been wonderful. And… this summer when I slowly faded and was faced with the worst fear as doctors could not assure me in any way that I was not going to end up in a wheel chair or die in a very short amount of time leaving my children without a mom. And… I guess now as I march off to the doctors each day and face stupid treatments. Do I wish that some of these things had never happened? Well… who wouldn’t? But looking back on them I can clearly see that these were turning points in my life and have made me who I am and I look back at it believing that I was meant to go through each of those things because I learned so very much from each of those times; far more than I have ever learned during normal days when everything was running smoothly. They have empowered me and made me very strong and not necessarily fearless but far less afraid as I am quickly learning that I can handle anything that comes my way. When I am with the many specialists and residents I see, I see a lot, they will tell me information or give me results and they are always so surprised by how I react. This week a resident asked me to list off the side effects I was having from the drugs and give him a history of everything that has happened since this spring. I did, in my own original way, complete with special effects, facial expressions and jokes. I would add a musical soundtrack at this point if I could since I have had to retell my story to so many med students that I feel I not only need to entertain them but myself too. When I was done, he looked at me with surprise after realizing he had just spent 15 minutes laughing and asked “are you really this upbeat about all of this because you seem very positive?” I think he was referring to my enactment of the fruit flies and the T-Rex arms incident. I responded “pretty much.” I have had at least five different people in the past two months try to explain to me that I “…may have cancer somewhere,” which I always respond to with “I know, I know.” Once I got tired of hearing it and the amusement of watching their shock at my smiling response wore thin I would head them off before they could even start. I knew what technicians and doctors were about to say by their change in expression and I would say it first… “I know… I may have cancer still” with a huge smile on my face. I am certain that I have left many a room with everyone thinking that I was completely insane! LOL The truth is that after facing my past situations and working my way through each new one it has become easier and easier to be less fearful or bitter and I am a completely different person than the person years ago who first faced Lupus with tears and heartbreak. Although I am still certain that I don’t have cancer and all tests so far have confirmed my belief. Just a few more to go and I will be proven right.
Back then, when I first got sick, I thought my world was surely coming to an end and I made myself more miserable and sick with my negative attitude. Those days were so very dark for me and I was very angry and jealous of everyone else who was well and did not have to face a lifetime of hurting and limitations. Not that I would have wished for anyone else to be sick too and I would have taken the spot of any of my friends and family to save them from what I was going through; I just wanted to be well again like they were. Not a single person ever knew that I felt that way because I hid it well from everyone. I was not happy with the support I got from those around me, I sometimes truly believed that no one really cared at all, I viewed the many years of being sick that I had to look forward to with a lot of anger and I was so fucking mad at the world and everyone in it that I had to fake my way through a good year of my life with an insincere smile on my face while I secretly wished that I could be anyone else but me. Part of the problem was that Lupus hurt so badly and it is pretty hard to be cheerful when you wanted to throw yourself out the window to stop the agony. Another problem was that I didn’t share my feelings with anyone so I really did not get the support I needed and I know now that that was my own entire fault. Somehow I expected people to be able to look at me, see the pain I was in, read my mind and help me. Apparently I believed I was surrounded by a bunch of psychics who were failing miserably at their job. Now I will just tell people when I feel like crap but I make sure I say it in a way that is funny so it goes over much better than simply whining all of the time. If I need them to tie my shoe or open my water bottle I just tell them and if I need a hug I ask for it. When I first got sick I was completely unable to do this. Invisible illnesses are also very difficult to deal with because no one knows there is anything wrong with you unless you tell them so no one would know that I was sick and I was constantly asked to do things, to work hard, to keep up with my chores and responsibilities even though I was exhausted and could barely keep it together. I was also desperately trying to hide my pain and nausea from the chemo from my three very small children and acting normal was very difficult. There was one day that I fell asleep on the floor of my living room while folding the laundry and missed picking up my son from school. The school called everyone and finally I woke up and ran crying to the school with an infant in tow. I ran into the office full speed and then just broke down weeping and told them all to go ahead and call Children’s Aid because I was unfit. The ladies in the office were so sweet and all just had a good laugh and comforted me probably knowing that they were witnessing a complete melt down and one false move would send me into hysterics and I would never leave their office. I needed to ask for help and I wouldn’t.
I also had a huge problem with telling anyone “no” and I never wanted to let anyone down so even when I was ill I would often take on way more than I should have. I was the head of my boys’ Beavers troop at the time and I had explained my health crisis to everyone asking to step down and just be one of the regular leaders but no one could take the job so instead I found myself throwing up behind a tent at a Beavers Jamboree and shaking like a leaf after leading a group of boys through activities in the snow for seven hours post chemo treatment. Now, I probably would still lead the boys today but I wouldn’t feel nearly as sorry for myself, I would find the humor in the whole situation and I would make sure that I had a bunch of people helping me out so that I could have fun with the kids and enjoy myself. Back then I still had fun but then felt miserable for the next week. One of the biggest reasons my attitude was so negative was that I was too afraid to ask for help or demand help because this would then require my explaining that I was sick and I was really embarrassed to have to do so because I didn’t look ill and I was afraid that no one would believe me or that they would think that I was faking. Some of the responses I got from people only helped to confirm my suspicions as I would hint that I did not feel good and the person I was explaining it too would tell me that they didn’t feel well either or they would tell me that they knew someone with the same illness and they were fine, so I stopped even mentioning it because their responses would irritate me. I now know that they just didn’t know what to say and were most likely trying to make me feel better. It took me awhile to be able to put myself in their shoes and realize that no one ever knows what to say to someone who is sick or dealing with a loss and I smartened up really quick because if I was going to judge people by saying the wrong thing to me when I was ill then I would soon have no one left in my life because no one ever says the right thing all of the time, least of all me! I am notorious for putting my foot in my mouth and I realized that how could I judge others when I myself never knew what to say. Now I love it when someone says something completely inappropriate because I will have a good excuse to laugh at and tease the other person and my friends are not nervous around me as they know they can basically say anything to me and I will respond with a laugh. My friends are very truthful with me now as they don’t have to walk on egg shells around me. When I told them I thought my meds were making me blind they went off on a tangent teasing me about the sexy librarian glasses I needed to get and I won’t go further into their dirty comments but let’s say they got completely off topic. Yet this is what comforts me the most, because I know that they are being sincere with me and speaking their mind and they could not have done this had I not come to accept the fact that I had to stop second guessing what people were saying to me and judging people based on their answers.
So instead of being honest and explaining that I was sick to everyone, I would get up each day and I would stick my fake nails on the spots where my own had fallen off, I would slap on my wig and paint my makeup on to cover up not having eyelashes or eyebrows. I would wear clothing that would cover up rashes and scars from my Lupus rashes. I would cover up sores on my lips with lipstick. I would wear comfortable clothing so that I could try to keep up with everyone even though I was in pain and try to get away with wearing flats because high heels would cause my joints to scream. When I would travel with friends I would sleep in my itchy wig so that they wouldn’t see my bald head and I would make excuses not to go with them for pedicures because I didn’t want them to know my nails had fallen off again. I was jealous of my friends’ hair, their perfect teeth, as mine were falling out, their finger nails, their ability to walk and walk and I was mad at how everyone expected me to keep up with them knowing that the next day they would all be alright and I would spend three days afterwards shaking with fevers and cold sweats and dragging my but around for days. I had a downright nasty attitude and I did not handle my challenges very well at all and through it all I never let anyone know that I felt that way because I secretly hated myself for being so weak and petty and not rising to the challenge that life had brought my way and I hid from basically everyone I could and then faked happiness when I couldn’t. I was a completely different person but as more and more challenges came my way I learned to adapt and accept and all of the bitterness, unhappiness, jealousy and fear disappeared bit by bit and I soon accepted that my journey would be different from many of the people in my life but that I could turn it into something beautiful and maybe even one day inspiring. I could accept what was happening to me and start to look for the good and the funny in every situation and I slowly began to be able to do so. With practice I became really good at it and it also allowed me to pick out the humor that is always happening around me in the world and I can honestly say now that at this moment in my life, even though I am really sick again I have never been happier.
Another thing that happened over the years was that I became much better at recognizing when other people were in pain and it opened my eyes so that I could notice that most people are also dealing with illnesses, heart breaks and disappointments. I watched people I love deal with cancer, lose children, lose spouses and I watched other people struggling with illnesses, depression and anxiety and it broke my heart but taught me that I had it pretty good and needed to stop feeling sorry for myself. I learned that if I helped others and went out of my way to try to put my selves in their shoes and see their pain and hurt that I was able to relate with them in a way that others couldn’t because I had been in that dark place too and I could help them in any way that I could, even if it was just to cheer them up with a laugh. Helping them to laugh at their situation helped me to laugh all that much harder at my own. I learned to look at my own situation and see the humour in the everyday mishaps and I learned to appreciate all of the hilarity that comes out of the struggle of this life. I had a good friend pass away from cancer. He knew that he was going to die and when his nephew who owned a funeral home showed up to see him, he yelled out “Tell him I’m not ready for him yet!” This same sweet soul passed on the message to everyone that we must not waste today’s happiness by worrying about what may happen tomorrow and he lived an amazing life following this rule. Whenever I start to worry about what may happen I will say those words in my head and it will help me to let whatever is bothering me go so I can go back to enjoying the moment. This was a wise man and beautiful soul. I have been blessed to have so many beautiful souls like this in my life and I have hung onto every word they have said. I have another friend who reads my blogs and cheers me on, telling me she admires my positive attitude. This same woman out walked me last year at the walk for Breast Cancer with only one leg while fighting stage four breast cancer. The fact that she would cheer me on and find my attitude inspiring takes my breath away as I can only dream of being as inspirational and strong as she is. I have another friend who recently found out her cancer has returned and she too has read my blog and cheered me on only days after getting her own devastating news. So many inspiring people surround me and I truly love them all with the bottom of my heart. Being sick has taught me to be careful and to remember and look for what is beautiful in each person that comes into my life and I now take the time to admire what is positive and wonderful in each person I meet because there are way more good people out there in this world instead of bad.
The way I deal with what I like to call “my most recent disasters” is completely different now. My positive attitude is genuine and I am truly at peace and content with whatever happens. I still have moments when I am horribly afraid or sad but they are few and far between because dealing with these challenges has given me a knowledge that I will always come out of the other end ok and that whatever will happen will happen no matter what I do so I may as well enjoy every moment I get and not spend my hours worrying over things I can’t change. There was one day this summer when the doctor told me she believed I had Muscular Dystrophy that was progressing rapidly and then started asking me questions about my children, explaining that if this is what I had they would have it too as well as my nieces and nephews. No doctor has ever told me anything worse than this doctor as she basically was sealing the fate of me and all of the children that I love the most in one single statement. She had no idea that by telling me that I had Muscular Dystrophy and so may the children that she was literally tearing my heart out of my body because she had no idea that I am an avid Googler and research junky so I knew every detail of every possible muscle disease that I could have at that point. She had no idea that I already knew that Muscular Dystrophy, in my case and progressing at that speed, could not be cured or that I knew that if the children had it they would all get it even younger than I and face a far worse fate than I would. I left that office and I would have sprinted to my car, but I could barely walk down the hallway with my Robo Walk, and for the first and only time everyone in that hospital would see me cry my way down the hallway. I phoned my brother so that I could send him into hysterical research; misery loves company after all, and then drove home. I had the roof down on my convertible, music blaring, wind in my hair and by the time I got home I was good and ready to face it all and do what I had to do to try and make this ok for everyone. It no longer takes me much to get a grip and face the things I have to face. Years before, a situation like that would have sent me into a depression and fit of anxiety and hysteria that would have lasted for days or even weeks and now I can adjust in a drive home. Although I am soooooo thankful that it ended up being just another autoimmune disease because the thought of the children I love being sick really would be more than I could bear. I now face everything that is happening to me with an ability to see the humor in every situation and in the everyday. So these diseases and challenges have been a blessing for me because they literally have changed my view of the world. I enjoy my life, my experiences, my successes, and even my failures more than I ever could have if my life had gone perfectly. Last year when I went clip and climbing with my children and brother they had an amazing day and now have wonderful memories but for me it was more than that. I probably enjoyed the day ten times more because it was also a challenge overcome and that is my gift because everything gets to mean that little bit more for me and I am blessed with the opportunity to be able to truly enjoy life’s experiences a little bit more than others since I can no longer take it for granted as I used to before I got sick. If I had gone through this life with everything always perfect and always feeling well I never would have learned to love as deeply as I do, to appreciate my family and friends as much as I do, or to appreciate the beauty that can be found in a life that is far from perfect. I am truly happy!