Hi, my name is Karen Perger. I am honoured to have been asked to do a guest post and lend a parents perspective and voice to Wheel Love.
My husband Dave and I just celebrated our 30th anniversary. We have two kids; our son, Brandon, who will be 23 in a couple of weeks and our daughter, Shannon, is 20. We all really enjoy spending time together. Dave and the kids like watching hockey and golf together when time permits and we all enjoy watching certain reality TV shows as a family. We also like golfing and playing tennis together… which means the world to us since Brandon is in a wheelchair most of the time
In April of 2011, I took the kids out for dinner. Brandon was a junior hockey player (rookie of the year!) and had just moved back home a few weeks earlier after the season finished. He was supposed to go out with friends that night, but had cancelled because he had a bad headache. He went to bed at 9pm and when I checked on him at 11 he said he was going to stay in. At 730 the next morning, I found my then 17 year old son Brandon in his room suffering from a Grand Mal seizure. The only reason I had checked on him that next fateful morning was because I heard him coughing and I knew he must have had a decent sleep after going to bed so early. I called 911 and within 20 minutes of arriving at the hospital they suggested a breathing tube.
Brandon had Acute Bacterial Meningitis.
In the first 24 hours they told us that he wasn’t going to make it; his brain was so swollen that it was heading down towards his spinal cord and he would suffocate. But he defied the odds; two weeks in the ICU in Kelowna, a month in BC Children’s Hospital for 2 brain surgeries and 4 months in GF Strong Rehab in Vancouver.
In the early weeks, Dave and I didn’t sleep and we couldn’t even think about the future as we didn’t even know what the days and weeks ahead would bring. We were existing minute by minute and hour by hour. Even the specialists didn’t want to offer any prognosis. I got an apartment in Vancouver, 4 hours from home, so I could be there to love and support Brandon, but also so we could maintain constant contact with the doctors and the team caring for him. Dave and Shannon came to visit on weekends. Unfortunately, Brandon missed his high school graduation and all the pomp and circumstance surrounding it.
We all cried.
And just days before he got sick, he had signed with a Junior A Hockey Team to go play on the island. We all cried because we knew he wouldn’t be able to go.
In the beginning, Brandon was paralyzed for a few days. He was fortunate to always have sensation (which is feeling from the body that is communicated TO the brain) but it was Brandon’s mobility which was affected (which is the communication FROM the brain to the muscles). As Brandon’s mom, I knew he was used to “team” analogies so I told him that this recovery wasn’t just on him – it would be a family/team effort. Brandon was SO weak in the beginning that I think that’s what got him through. We are now 5+ years past his illness and we are blessed because he still slowly continues to improve.
I am the type of person that always sees the positive.. annoyingly so. I knew I had a job to do and this was the most important job I would ever have, so I just did it. I talked to nurses, physiotherapists, occupational therapists, other patients. I wanted to learn as much as possible in the hopes that I could use the information to help Brandon. And I cried. I went for walks and sat outside in the sunshine. I found people to be social with so I wasn’t totally alone during the week. I wanted Brandon to see me as someone he could trust and know that I was going to be strong enough to be able to fight and advocate for him. I think that’s what helped him the most – the total trust and open communication that we had. We didn’t know what Brandon’s future or our family’s future would look like, but we knew we could survive whatever our “new normal” would become.
For the most part, the reason Brandon is in a wheelchair is because of the weakness in his legs. His left arm is still weaker than it used to be so the term given to Brandon is that he suffers from triplesia – which is weakness in three limbs. He is able to use a walker and walk up and down our street a few times and with the help of a cane he is also able to get up and down the stairs by himself. We moved a couple of years after Brandon got sick so we could buy a house that could accommodate an elevator. He is very regimented when it comes to doing his physio and weights at home. He knows what it took to regain his physicality and he doesn’t take it granted for a minute.
Now Brandon is able to fully participate in our family life.
The hardest part of our whole journey has been the emotional side and Brandon agrees. Because he was an athlete prior to getting sick, he was able to talk and ask questions on par with all his physiotherapists; he understood muscles, knew their names and knew how they should work. So even though the physio was absolutely grueling, he had the mindset to get the job done. For Brandon, the hardest part was knowing that his illness was in his brain even though it affected his body. He questioned if he would still be smart and for a couple of years, he was afraid to “try” school again. It was difficult for him to be social because his confidence took such a hit when he went from being a “jock” to being physically so weak AND being in a wheelchair. Most of his friends’ homes were not accessible and he definitely didn’t want to go to a nightclub. He started to suffer from panic attacks. Getting his chair in the car was a pain, finding parking where he could safely get out of his wheelchair was iffy, and learning how to be social again was hard. He was nervous about going out because he didn’t know how his body would react. Brandon was used to getting tired after a hockey workout with his personal trainer, but this new kind of tired was completely off the charts. For years, he tired so easily and social situations would just compound the problem. Would he have a panic attack? Would thinking about going for a pee stop his bladder from actually being able to go? Sometimes yes, sometimes stress would make him pee even more. It can still change so you just never know.
Brandon admits that this last year has even impressed him. He finally got over his fear and tried sledge hockey. Oh my gosh, he was addicted before he hit the ice the first time. He plays tennis once a week and with the help of a paragolfer, he goes to the driving range once a week and goes golfing once a week. He also started hand cycling this summer (thank you for never giving up James!) and again I would use the work “addiction”. As much as he says that he does it for his renewed love of sports, I am happy because it allows him to be social in a setting that he’s comfortable in.
Through all of this, the ups and the downs, Brandon never strayed from being the happy, goofy guy he was before he got sick. He was always polite and respectful – even if it was through tears during some awful procedure. In the first year following his illness, he talked to me about the possibility of being depressed. When he went and talked to the doctor about it, she said he could come back again but that she thought he was really doing quite well. I think her confidence in him and the solid love and support of his family made him realize that he was doing okay. Whenever he was in doubt or needed to talk, I would drop everything and talk with him, even if it was in the middle of the night… after all I was lucky to have my boy.
Over the years, Brandon has learned that even though life isn’t easy, things could have been so much worse. He first learned this from living at GF Strong (the in-patient rehab facility in Vancouver) for 4 months. Every patient has a story; everybody’s situation is different. You just can’t sit around and worry about yourself because your eclectic bunch of friends all have problems too. Brandon also learned this from doing neuro-physio for over a year at Kelowna General Hospital. Brandon is considered to have had a traumatic brain injury (TBI) because the meningitis was so b
ad and yet he’s been fortunate enough to be able to drive for years with hand controls and he works hard to earn A‘s and B’s in the college classes that he takes online. But other TBI patients are not as lucky. We have met many people who have cognitive challenges or mood and behavior issues and some whose personalities have changed. Others require a full-time care aid. And for all these reasons and many more, Brandon feels very blessed.
It is still a journey but we are doing it together as a family and we are trying our best everyday.