My journey living with Crohn's Disease and an Ostomy. I am raising money for The Hospital for Sick Children to update the outpatient treatment rooms so that children can have a comforting and uplifting environment that promotes healing.
Today is World Health Day; a day to help promote healthy communities, and the importance of healthcare worldwide. As a person living with several chronic health conditions, healthcare is absolutely vital to my survival. I fear that the direction that the Ontario government is going with healthcare, may not be supportive or benefit the health of us living with chronic illness.
Seven years ago, I was diagnosed with severe Crohn's disease, a form of Inflammatory Bowel Disease. Despite my doctors best efforts, I have yet to reach remission in those 7 years, which has led to 19 trips to the Operating Room, the surgical removal of my colon, and many long hospitalizations. Prolonged inflammation can lead to cell changes and the development of colo-rectal cancers, which is the second most deadly form of cancer a patient can have. In June 2018, I was diagnosed with rectal cancer at the age of 14. Tomorrow, I will be having my rectum removed for Operating Room trip #20.
Did you know that colo-rectal cancer, when it's caught in the early stages, happens to be one of the most curable cancers to have? I'm among the extremely lucky; because of regular colonoscopies, the doctors caught my cancer in the early stages. If it hadn't been for the frequent monitoring to look for these changes, my cancer story would be very different.
My cancer surgery doesn't scare me as much as the proposed changes to OHIP that allows Ontario residents access to healthcare services. Patients with Inflammatory Bowel Disease can develop intestinal blockages, strictures (narrowing of the intestines) and have an increased risk of intestinal perforation during these procedures. The procedure itself can be painful to those who have significant inflammation in the bottom part of their intestines, and can also lead to increased anxiety. It is my worry that with the increased risks associated with unsedated colonoscopies, heightened anxiety and push to do less frequent scopes, that IBD patients will put off these procedures. Colo-rectal cancer can be quick to develop, I went from inflammatory cells to cancer cells within 6 months. Quite simply, a colonoscopy saved my life.
I am writing in hopes that my government leaders will take a moment to consider how their proposed changes will negatively impact the health of so many. Yes, there is a cost to doing regular, sedated colonoscopies, but there is a higher cost associated with not doing them. The cost of chemotherapy, radiation, diagnostic and monitoring tests for someone with advanced cancer will exceed the costs of regular preventative tests. Promoting the health of all Ontario residents can help to avoid the costs to the economy and ensure that we all can contribute to society.
The province of Ontario has the chance to be a leader in providing great healthcare. My future depends on the decisions that you will make in the near future. Please, reconsider these changes and find ways of promoting the health of everyone. Sincerely, Jacob Ralston
They say a picture is worth a thousand words, so what words would you use to describe this room? Imagine being a child, how would you feel walking into this room? What comforts do you see in this room for a child who is feeling scared, alone, worried, or sad? How would you feel if I told you that for the next 8 hours, this room would be a place that you couldn't leave?
Now what if I told you that this is an outpatient treatment room at a children's hospital?
My first impression of this room goes along with words like "heavy", "depressing", "discouraging", and "boring". In order to "win" a trip to this room, I had already failed other treatments to get my Crohn's Disease under control, so there was already this feeling of having been defeated. Now, I was going to start a new IV treatment, where the potential for serious reactions meant that it had to be done in a carefully monitored environment. It was so carefully monitored, that for the duration of the treatment, you need to pretty much stay in your chair, with the only distractions other than medical equipment being the items you brought with you that day. These were the rooms where I was started on Remicade treatments, and after failing Remicade, received on-going iron infusions. This is the room where I sat wondering how this treatment would make me feel, if it would be helpful, what reactions I would experience from it, and plenty of more questions. This is the room where up to 6 other patients are receiving their own IV treatments, but you can often tell that they too, are just as worried and feeling the weight of the world on their heads. This is the room where you often find out whether you are responding to the treatments. This is one of those rooms that you'll likely remember for a very long time to come.
As most of you know, I've spent A LOT of time at Sick Kids Hospital in various departments for my ever-growing list of medical challenges. I've had a lot of opportunity to compare other areas of the hospital with this area, and really, there is no comparison - this is one of the areas of the hospital that is in desperate need of an update. Unfortunately, this is also one of the areas of the hospital that is severely under-funded within the hospital's budget, with the majority of the general fundraising going to help other areas of priority. The result are these rooms where the environment does little to help lift, engage and support the patients who use them.
This Giving Tuesday, I'm asking once again for your help to make my dream of child-friendly outpatient treatment rooms come true. These rooms should help to encourage healing, give hope, lift the spirits, distract from the worries, and inspire others. Jacob's Healing Rooms project at Sick Kids hospital will help to make treatment day better for all of those patients who will use one of these rooms in the future. Your generous donations will help to purchase materials such as covers for the awful lights, bubble tube machines, a fresh coat of paint (in a different institutional color!), as well as electronic gaming machines that will hopefully allow patients to play together as a way of building peer support.
I'm closing in on my goal, $42,000 out of $60,000 raised so far, but I need your help to turn my wish into reality. Please consider making a donation today to Jacob's Healing Rooms project at Sick Kids. Together we can make a huge difference in the lives of kids who are fighting for better days. Together we can make treatment day a bit less scary and depressing. Together we can change the whole treatment experience.
To donate: https://www.sickkidsdonations.com/registrant/FundraisingPage.aspx?RegistrationID=3641076
My life is complicated. At 12, my medication list is at times longer than those of senior citizens. I have more specialists than there are teachers at my school, or at least close to it. I have seen a doctor or health professional at minimum once a week for the last few years. I spend more time in a waiting room or doctor's office than I do anywhere else. My health prevents me from going to school for extended lengths of time, which does nothing to help build my friendships. This is my life, for better or worse. I am the one who has to live with having severe Crohn's Disease, Ehlers-Danlos Syndrome, Psoriasis, and other conditions. I'm the one who has to live with an ostomy after my colectomy, as well as a feeding tube. This is just the way my life is.
I had a recent experience which has been on my mind a lot and really bothering me. I had an encounter with a few mental health professionals who had completed an assessment focusing on the way illness has "invaded" my life. Because let's face it, chronic illness is just like an invasion. During the initial assessment meeting, my eyes had started to tear up from the dust or lighting in the room, or else from trying to hide a yawn. One of the mental health professionals was quite quick to point out in front of the group that I started crying when we started talking about a certain subject (I can't remember what it was). He went on to place all of these feeling words on me, and to make sweeping statements that in no way applied to what I was feeling. But I'm one of those kids who won't disagree with adults, at least right away without thinking about things first, so I didn't jump up and say "whoa" even though afterwards I certainly did.
On our recent follow-up with them to receive the results of their assessment, it left me wonderingwho the heck they were talking about, because it certainly wasn't me. Another mental health professional said that I was likely internalizing my feelings because I didn't want to burden anyone with how I felt, and that when I started crying during the meeting it was a sign of deep, buried feelings. I think I'm pretty clear with my feelings and have expressed them plenty of times in very public ways such as being published on The Mighty about my experiences being bullied, and living with an ostomy.
I'm also "too accepting". It is thought that I jump to accepting my health problems too quickly and don't allow myself time to feel the negative. That acceptance is the way that I use to escape from everything that life has thrown at me. And I jump too quickly to acceptance because I feel "why bother" talking about the negative. Which goes hand-in-hand with me being "too positive", which I also use as an escape route.
This has been really upsetting for me. I've worked hard to accept that my "old self" is just that, my old self. My life has changed dramatically but it's still a good life. My mom has always said since I was born that I have a choice when it comes to bad things; I can either let it eat away at me and be miserable, or I can find a way to work around it, to adjust.
Being chronically sick takes a lot of energy out of me. Just to get through a school day right now requires every bit of my super-human strength. Feelings require energy too though, and if I spend all of my energy on focusing on the negative, that's less energy I have for everything else. Don't get me wrong, I still cry, I still get really frustrated and go off on 30 minute rants. But then I move on. I have to. If I don't keep moving on, what good is that going to do? If I chose to stay miserable, to stay in that place of anger and sadness, wouldn't this have more of a negative effect? So I chose to go to my happy place. My happy place is helping others. The feeling I get when someone says "Thanks Jacob, you're a great friend", helps me. It gives me strength to keep going. It inspires and motivates me. It makes me feel like I can accomplish anything.
What I am having a tough time accepting are the assumptions made about me without really getting to know who I am. Things like "Well a lot of kids your age Jacob feel that....", or "a lot of kids that we see like you feel....", are not predictive of how I'm feeling. I was more than happy to discuss my feelings directly when they were chatting with me. But they also needed to be willing to hear the answers that I was giving them and not put words in my mouth, or tell me what I'm feeling based on the way "most other kids" are. I am not "most other kids", I am ME. I am Jacob, and I have feelings that I'm not afraid to share. This confuses me. I can't talk about problems I don't have, and because a lot of other kids feel differently than I do, it's a problem? Since I don't have problems with being overly angry, or depressed at my situation, that's also a problem? But then on the flip side, if I only spoke of the negative, wouldn't that also be a sign of problems? And if I deny that I feel this way, than I'm just stuck in denial. And here I thought that the goal of the game was acceptance and adjusting to your new life by using positive coping skills.
I've decided to stay positive, that there's nothing "wrong" with being me. I like me. I think I'm doing an amazing awesome fantastically superb job coping so far.
A few weeks ago, I had the amazing opportunity of attending the Member's Statements Session of the Ontario Legislature at Queen's Park, as a special guest of Member of Provincial Parliament Granville Anderson. After meeting Mr. Anderson at one of my Jacob's Healing Rooms events, I had extended the invitation for him to join me for my Jacob's Birthday Bonanza party back in December to learn more about my Jacob's Healing Rooms project and my plans to help out Sick Kids Hospital by creating child-friendly spaces to receive outpatient IV treatment. Mr. Anderson was quite impressed with what I have done so far in fundraising and inspiring others to make a difference in this world of ours.
You can watch Mr. Anderson's speech via YouTube here:
Granville Anderson re Jacob's Healing Rooms 03 08 17 - YouTube
These amazing words of recognition for my Jacob's Healing Rooms, along with the kind words later shared by other Members meant so very much to me. It's very encouraging to have my efforts recognised and it motivates me to work even harder towards my goals. However while it is nice to be recognised, I also am aware of just how much more I want to do to make a positive change in this world.
During my visit to Queen's Park, I had an awesome time chatting with another one of my local Members of Provincial Parliament, Jennifer French. We were talking about how Ms. French is actually my local MPP, while Mr. Anderson is in the next riding over. Good ol' political geographical boundaries, gotta love them. But the point is a good one - Jacob's Healing Rooms doesn't have a specific "location". Children come from all over Central and Southern Ontario to be treated at the IBD Centre at Sick Kids Hospital. The impact that I hope to have with Jacob's Healing Rooms will hopefully make a difference for children from all over this province. Yes, I'm working right now to transform the outpatient IV treatment rooms, but I'm also hoping that this is just the beginning of some wonderful things to come.
Jacob's Healing Rooms might be working to create a better treatment area for sick children and their families, but it's about so much more than that at the same time. I've been thinking a lot about this while I've been struggling to find the right words that fit with my thoughts. Yes, I started Jacob's Healing Rooms because of my experiences at Sick Kids Hospital getting IV treatments for several hours a day for my Crohn's Disease but it all came from recognising a huge need, something that was lacking that could make the treatment experience better in this world. And that's exactly what needs to be done by us all.
Regardless of our geographical political boundaries, regardless of our race, age, gender, religion and personal beliefs, we all have one thing in common; we're all capable of change. Each one of us has the ability to take their personal experiences, find something that would make it better, and create positive change. If we do this, if we each make just one positive change in this world, one act of kindness, our world would become that much better for everyone and the future generations. That's what Jacob's Healing Rooms is about.It's about bringing people together to help inspire them and encourage them to always search for the one thing that could make a difference to others. It's about dreaming big and finding ways to achieve those dreams. Kindness, hope and love are three of the greatest gifts that you can give to others. And the best thing about those gifts? They're free to give.
To Premier Kathleen Wynne, Health Minister Dr. Eric Hoskins, Speaker of the House, Dave Levak, Lisa Gretzky, thank you for taking the time out of your busy schedules to share some kind words of encouragement with me.
And Mr. Hoskins, when you asked me if I had any advice for you, we should totally talk because man, do I ever have some suggestions on creating healthier communities!
To learn more about Jacob's Healing Rooms project, please follow along on my blog, Facebook Page, Twitter (@KidWithCrohns) and Instagram (@jacobshealingrooms!