A true celebration of life: [email protected] an update
Back in February, we released an article entitled ‘[email protected]: Interview with a fundraiser’ in which we heard from Helen Owen as she embarked on a massive 50 challenges at 50 years old in 50 weeks with her husband, Simon, all to raise money for the Huntington’s Disease Association. In this article, Helen gives us an update on her challenges, what she’s learnt on her journey and reflects on what having a partner with Huntington’s means to her.
Why fundraise for the Huntington’s Disease Association?
"When I asked my family and friends in September 2018 if I should celebrate my 50th birthday by cutting off all my hair to raise awareness and much-needed funds for the Huntington’s Disease Association, the answer from my Husband, Simon, who was diagnosed with Huntington’s four years ago, was a resounding “NO!”. Simon stated that he wouldn’t let me back in the house if I went ahead with the hair raising plan! With this in mind, I had to come up with an alternative and my niece suggested 50 small tasks or challenges in 50 weeks at the age of 50. I thought ‘what a brilliant idea’ and that was it, I was off."
What have you learnt from your fundraising experience?
"Subconsciously, I now realise, that I was looking for a way to feel normal again I had already consciously acknowledged that being a caregiver was challenging and life-altering. I didn’t and still don’t know what the do’s and don’ts are when caring for someone with a life-changing illness but I was already feeling more of a carer than a wife. Having the complicated emotions, setbacks and trying moments, feelings of inadequacy to manage, I wanted to escape that often exhausting feeling of treading water and sinking under the stress and pressure of day to day life living with a partner with Huntington’s. Caring for a loved one strains even the most resilient of us."
How has this experience helped you?
"Nothing makes it easy to watch someone we love decline cognitively and physically in front of you, nothing takes away the agony of seeing them change from the individual that you fell in love with. How would you feel if you were losing control of your body, mind and independence? I don’t feel I would be handling it as calmly as my Simon is. Coming up with imaginative ways to spend days together doing normal and extraordinary activities has helped us get through just a small part of the journey we are on, making memories for today, tomorrow and the future is an amazing way to survive. We occasionally feel exhilarated and scared but mainly enjoy the world together. Suddenly we were husband and wife again and nothing else mattered for those few seconds, minutes or hours.
My need to plan, distract myself were all taken care of through doing this challenge. Tackling anything from…
- Completing a 3D jigsaw
- Soaring through the air doing the longest zip wire in Europe
- Baking cakes I had never made before and selling them on CakeThatHD! day
- Both of us holding a tarantula
- Trying falconry
- iFly the indoor skydiving experience
- Simon trusting me enough to be a passenger when I flew a plane
- Helicopter rides
- Driving a tank
- Getting lost in a maze plus so many more!
We could both independently choose our best and worst (definitely the sphering downhill, yuck) experiences, but I think ultimately the best is not defined by any single experience but by making the most of each opportunity. To share these memories with each other, family and friends and then reliving the memories by telling stories, validates that life matters every single day and that whatever life is throwing at us we will make the most of the precious time we have together no matter how long or short that may be."
What were the challenges of your adventure?
"Sometimes during this journey, I have wished I hadn’t started it as my stress levels went through the roof. I worried about Simon’s capabilities and my capabilities, then on top of that the draining task of constantly needing to repeat to Simon again and again what we had planned. But with love, patience and letting the role of wife and life partner kick in, experiencing the adrenaline kicks post-challenge and seeing the smiles on our faces, makes me so glad that my niece came up with an alternative to cutting off all my hair. Now we have those special moments, laughter, tears, memories, stories and photos to look back at on the journey ahead and we still have the hot air ballooning to look forward to in 2020 as due to weather conditions this challenge, unfortunately, didn’t get completed in 2019."
We would like to thank Helen and Simon for allowing us on this journey with them and to Helen for being open about how having a partner with Huntington’s makes her feel. If Helen’s story has inspired you to undertake your own extraordinary fundraising, click here to learn how to set up your event!
If you are affected by Huntington’s disease and are in need of support or advice, please get in touch with us on 0151 331 5444 or email [email protected].
Back in February, we released an article entitled ‘[email protected]: Interview with a fundraiser’ in which we heard from Helen Owen as she embarked on a massive 50 challenges at 50 years old in 50 weeks with her husband, Simon, all to raise money for the Huntington’s Disease Association. In this article, Helen gives us an update on her challenges, what she’s learnt on her journey and reflects on what having a partner with Huntington’s means to her.
Why fundraise for the Huntington’s Disease Association?
"When I asked my family and friends in September 2018 if I should celebrate my 50th birthday by cutting off all my hair to raise awareness and much-needed funds for the Huntington’s Disease Association, the answer from my Husband, Simon, who was diagnosed with Huntington’s four years ago, was a resounding “NO!”. Simon stated that he wouldn’t let me back in the house if I went ahead with the hair raising plan! With this in mind, I had to come up with an alternative and my niece suggested 50 small tasks or challenges in 50 weeks at the age of 50. I thought ‘what a brilliant idea’ and that was it, I was off."
What have you learnt from your fundraising experience?
"Subconsciously, I now realise, that I was looking for a way to feel normal again I had already consciously acknowledged that being a caregiver was challenging and life-altering. I didn’t and still don’t know what the do’s and don’ts are when caring for someone with a life-changing illness but I was already feeling more of a carer than a wife. Having the complicated emotions, setbacks and trying moments, feelings of inadequacy to manage, I wanted to escape that often exhausting feeling of treading water and sinking under the stress and pressure of day to day life living with a partner with Huntington’s. Caring for a loved one strains even the most resilient of us."
How has this experience helped you?
"Nothing makes it easy to watch someone we love decline cognitively and physically in front of you, nothing takes away the agony of seeing them change from the individual that you fell in love with. How would you feel if you were losing control of your body, mind and independence? I don’t feel I would be handling it as calmly as my Simon is. Coming up with imaginative ways to spend days together doing normal and extraordinary activities has helped us get through just a small part of the journey we are on, making memories for today, tomorrow and the future is an amazing way to survive. We occasionally feel exhilarated and scared but mainly enjoy the world together. Suddenly we were husband and wife again and nothing else mattered for those few seconds, minutes or hours.
My need to plan, distract myself were all taken care of through doing this challenge. Tackling anything from…
- Completing a 3D jigsaw
- Soaring through the air doing the longest zip wire in Europe
- Baking cakes I had never made before and selling them on CakeThatHD! day
- Both of us holding a tarantula
- Trying falconry
- iFly the indoor skydiving experience
- Simon trusting me enough to be a passenger when I flew a plane
- Helicopter rides
- Driving a tank
- Getting lost in a maze plus so many more!
We could both independently choose our best and worst (definitely the sphering downhill, yuck) experiences, but I think ultimately the best is not defined by any single experience but by making the most of each opportunity. To share these memories with each other, family and friends and then reliving the memories by telling stories, validates that life matters every single day and that whatever life is throwing at us we will make the most of the precious time we have together no matter how long or short that may be."
What were the challenges of your adventure?
"Sometimes during this journey, I have wished I hadn’t started it as my stress levels went through the roof. I worried about Simon’s capabilities and my capabilities, then on top of that the draining task of constantly needing to repeat to Simon again and again what we had planned. But with love, patience and letting the role of wife and life partner kick in, experiencing the adrenaline kicks post-challenge and seeing the smiles on our faces, makes me so glad that my niece came up with an alternative to cutting off all my hair. Now we have those special moments, laughter, tears, memories, stories and photos to look back at on the journey ahead and we still have the hot air ballooning to look forward to in 2020 as due to weather conditions this challenge, unfortunately, didn’t get completed in 2019."
We would like to thank Helen and Simon for allowing us on this journey with them and to Helen for being open about how having a partner with Huntington’s makes her feel. If Helen’s story has inspired you to undertake your own extraordinary fundraising, click here to learn how to set up your event!
If you are affected by Huntington’s disease and are in need of support or advice, please get in touch with us on 0151 331 5444 or email [email protected].