Smiles from the Heart

Todays blog is an entry by me, Michelle as this week it is my turn.

I struggle with how to start to write this and share this very personal aspect of this part of our cancer journey, an update of Richard and of our family.  To date, we have been fighting so hard to battle this disease and enter into this next phase with strength, dignity, with gratitude for all we have, and yet always still with hope.Things have become increasingly difficult as the disease progresses and Richard's health declines, especially over the last few days.  As you know he loves music, and so I often play music while we are sitting together and one of his favourite artists is Anne Murray.  As I worked through her playlist, one of the songs came on called "You Needed Me".  To be honest, I couldn't hold it together because the lyrics were as if they were written just for us and just for this moment,  reflecting upon everything Richard brings to my life and what he means to me.  

One of the very private things, is that throughout all of this, Richard wanted to make sure that I would not be burdened with so many of the details that come in life and management of our household and that everything is set and to give me strength to stand alone, when that day comes.  I have the pleasure to care for Richard with all my heart, with love, with dignity and respect for the man he is.  As the song goes -You Needed Me (but I also needed you).

In addition to music, I do read out all of your comments on facebook, messenger and email to him.  It gives him great pleasure, to hear your messages on how his thoughts and experiences resonate with you, and give you comfort in some small way.  Recently it was a dear colleague's birthday from his first year of teaching, and several  photos of the whole group of staff of that year were posted, circa 1990/1.  I enlarged the photos on my phone and we looked through all the people in the photo, and reminisced about different stories from way back then.  He really enjoyed it and remembered every face. It brought a smile to his face and also to mine.  

Although Richard isn't able to be on social media and answer your messages directly, he has assigned me as his chief "secretary" and I am happy to share any messages and stories with him.   We love to see and read the comments.  Sometimes these memories are private and not to be posted on facebook or as a blog comment.  I do encourage you to send them through as a DM or as an email - I will pick them up and make sure he hears them.

I know that sharing stories and remembering a life well lived and the impact he had on others is very comforting to him and brings a smile to his face.

Thank you for bringing a smile to my heart and to that of our family.  This is especially dear to us now, as Richard is entering into Hospice Care and we focus on maintaining his comfort at this stage of our journey.

Love Always Michelle and family XOX

Accessibility - A Real Eye Opener

 Today's blog was written by Richard and transcribed by My Michelle.

This week was a real eye opener for me and my family.  It was the first time I really had to venture out into public with a wheelchair.  We were headed to the Maroon 5 concert and I didn’t think I’d be able to make it with walking, so we brought my wheelchair as a back-up.  I was lucky we did, because in the end we did need it. Traffic that day was in a gridlock and all parking lots were full no matter where we went. We anticipated we had a long walk ahead of us - so wheelchair it was. But I have to say, that it was a real eye opener from a wheelchair accessibility. This was for many reasons such as:  there was a lack of signage or special accommodation for people with mobility issues and disabilities;  the ramps were not well marked in terms of location; there was a lack of designated parking or ability to drop off and pick up at the venue for people who needed assistance. We were counting on this in order for me to be able to attend the concert.  

Luckily we had our son Josh with us who was strong enough to manage the steep inclines of the ramps (when they did exist), as well as the twists and turns and getting over curbs.  Even lifting the wheel chair in and out of the back of our vehicle was a challenge and I’m not sure Michelle could have handled it on her own.

One thing that I hadn’t considered, was the impact of a crowd of walking people and I was in a seated wheelchair.  It was quite claustrophobic as the crowds surrounded us all around and of course you had people looking down at you, cutting in front, not leaving a gap etc, although most people were certainly polite.  Certainly from my point of view in a seated position, all I could see were backs and belts, and had to always be looking up at people.  I was also worried about ramming into the heels of people in front of me. As the crowd moved through the exits - again it was an eye opener, as for crowd control they had barricades up to move and corral the crowd into several queues instead of a mass exodus.  Well as people walking, you can squeeze or easily move, but in a wheelchair, you  are what you are  in terms of taking up space.  Michelle and Sophie walked on either side (my body guards Lol) and Josh pushed from behind and we made it through, but it was a challenge.

As things go, during the concert we needed to go to the restrooms - there was an accessibility washroom, but it was in a very bad state of cleanliness - and there was only one to choose from - but what can you do?  In a time of COVID and increased hygiene measures - don’t forget the accessibility washrooms! The people who need these accommodations need and deserve clean washrooms!

All that being said, we managed to find our way into the venue, made it on time to hear Maroon 5 and it was well worth the effort!  It was non-stop hits, a great stage show, and the accessibility seats had a great view!  So glad I went!

The next day, I was experiencing a few side effects and needed to go for an ultrasound of my leg as I had some unusual swelling just on one side.  I was able to get a same day appointment at the hospital to have this sorted but again, we needed to take the wheelchair and we encountered more issues with accessibility and at the hospital.  The trek from the parking lot to the main doors, involves a steep ramp as well as several sidewalk curbs that are not well maintained and have deep ruts - which of course the wheel chair wheels sink right into.  There is also only one curb that is a wheelchair ramp in front of the door, and a car was parked right in front and blocking it.  Can you believe it?  Despite there being space on either side of it, for a car to park.  We had to go and knock on the window and ask them to move so we could get into the hospital.  We barely made it to the appointment on time - but we did make it, once again.  The Erdmanns always persevere! On the return, we had to reverse the same path, over the same curbs and a downward steep ramp - it was all Michelle could do to hold on to me.  When we got to the car - I got in OK, but Michelle could not lift the wheelchair into the back of the car.  It was too heavy and too awkward.  Luckily someone was walking by and was willing to give a helping hand.  When we got home - it stayed in the car until Josh got home and could lift it out.

I will never forget these days - some people have to deal with accessibility issues every day of their lives.  Having experienced it ourselves, our family is sensitive to the issues and look at accessibility differently. I would ask that you too consider when you might hop in that disability parking spot - just for a sec as you run in to do a quick errand, or pull up and don't "see" the ramp, that there are people who depend on this and are major inconvenienced by it.

For me and for now, I continue on our palliative care journey, trying to live my life to the fullest I can.  I have a few good days, and lots of bad days, but through it all, I’m still me. So glad I have the option of "wheels" to get around.

Richard

Dazed, confused, moody (and running a bit late)

This blog was co written with the support of my Michelle.

The last two weeks I've been experiencing some side effects to my comfort treatments including feeling a bit dazed, confused and moody.  I do blame the drugs for this, however regardless of the reason, it has been impacting my ability to communicate.   I mix up passwords for social media, I get mixed up on the days sometimes, and well, yes I am having mood swings.

What do I mean by dazed, confused and moody?

Dazed? I feel a bit as if I am in a fog and have  trouble concentrating most of the time.  In a daze, is the best way I can describe how I feel.

Confused? I mix up my numbers and letters and get really frustrated with social media and with auto correct, it is a constant battle to get things typed out!  I forget what day it is - but I think that is somewhat normal given COVID and end of summer .  I do get frustrated with my confusion and as a result you will find I'm not on social media as often as usual.  My apologies if you got a mixed up message from me - I blame it on the autocorrect lol!  You will also notice that lately my blogs have been co written by the support of my family- it's easier for me to tell them what to write, and they type it out.

Moody?  Who can blame me for being moody, but it is hard to keep the filter on and sometimes I am lashing out a bit.  I feel it happening and I do feel it is related to the drugs.  I have heard of something called steroid rage, while I am not in a rage, I do feel that the steroids that help me in so many ways, are also causing the mood swings.  So you have to balance, or give and take, the benefit with the down side of the drug.  The benefits are it gives me an appetite, helps with my energy level and strength, but we have the mood swings.  Luckily they have a pill for that too - but it shows that often taking one medicine, leads you to take another to deal with the side effect and so on and so on.  Hopefully things will start to even out for me soon.  I am thankful I have such an understanding and forgiving family.  Love them!  

And running a bit late?  Well my apologies to you all!   I like to post these blogs on Fridays, but I was able to make it to the Maroon 5 concert on Thursday evening, and it really knocked me out of commission for Friday and I needed the time to rest.  It was a fabulous evening and I a glad I pushed myself to go.  However it also really opened my eyes and that of my family, in terms of accessibility.  We took my wheelchair, it was quite a road trip.   More on this next week!

Wishing you clear thoughts, productive days and positive moods!

Wishing all my education colleagues and those heading back to school next week, all the best!  I will be thinking of you while sipping my coffee on the deck!

Richard