In New York

In New York

Wednesday, 12 November 2014

Wheelchair Candy

I said October was a good month for me. This is not just because of Boston, but also because I enjoyed some literary success! Carers UK ran a creative writing competition and announced the results in October. My story was highly commended. The theme of the competition was Caring with special emphasis on Friends and Family. That theme caught at my heart and it seemed to me that the story I wrote appeared on the page before me, almost fully formed. I wanted somehow to get across to my reader how being a carer to someone who is also a partner impacts on your relationship and how sometimes it’s easy to forget who you are and why you are together.

Here is a link to the competition results and I would urge you to read all the winning stories and poems as well as the highly commended entries. Many thanks to Carers UK for the opportunity to tell my story and for publishing ‘Wheelchair Candy’ on their website as a ‘highly commended’ entry.

In which I travel alone to Boston, MA

Good Wives at 'Orchard House'

October was a good month for me. I travelled alone to Boston, MA to spend a week with my dear friend Carmel and her husband, Breandan. This was a carer’s break and a half, let me tell you. The best time of year to visit Massachusetts is the Fall and the beauty of the leaves did not disappoint. At the airport, I reflected on the trip to come: Sunday October 12 2014“So, the day is here and I am waiting for my Gate number to come up. I am on my way to Boston. I have to write that down to believe it’s true. I am alone and this is very different for me. I am feeling sad because I have left Roch behind and I wonder – will I regret spending this week away from him? The people who matter say it’s a good thing that I’m taking this break and for a long time I’ve thought about doing it. Going to see Carmel, exploring Boston. This is the best time of year to visit, they tell me. Not too cold and the leaves are beginning to turn. I am looking forward to lots of new, positive experiences but it’s also a glimpse of a future for me. A glimpse of what it might be like without Roch. I am thinking a lot of the old days and the young Roch. I feel so sorry for him and admire his bravery so much. His stoicism, his patience, how calm he is in the face of what awaits him.”

We talked about going together but he was adamant that I should go alone, that it wouldn’t be a break for me if he came along too. He was right and I will always be grateful that his big, generous heart urged me to go and I am proud of myself, too, because I did go and spent the most wonderful week there. Remember, my blog followers, in a very early blog post, I recorded the reactions of many on hearing the news of Roch’s diagnosis? Do you remember the person who simply told me “You’ve a hill to climb”? That was Carmel.

Carmel and Breandan – best of good company, best of friends – thank you.

Carmel – we’ll always have Concord and Orchard House – and the Isabella Stewart Gardner Museum! BFF

Of Football and Family.

With Alan McCormack. Many thanks to Christy (far left) for arranging this.

Time for a Catch-up Part II: The Family Visits

I’m rather proud of the fact that of all the home matches at Brentford FC this season, I have only missed one (I was working that day). Roch hasn’t missed any. The proud owner of a Carer’s Season ticket, I am following their progress in the Championship with interest. The more games I attend, the more I care. I haven’t quite reached the nail biting agony involved in watching Arsenal but I’m beginning to care about Brentford.* This is a good thing when they win. It was certainly a good thing on 27th September, when Brentford beat Leeds at home 2-1. That was a special one.

This was a greatly anticipated weekend as all of Roch’s brothers, one brother in law and a cousin travelled from Ireland to attend the match with us. Amongst them were three Leeds fans! I’d say sorry guys but really I’m not. WHO ARE YA?

The highlight of the day was meeting right back and goal scorer Alan McCormack after the match. Many thanks to Christy for arranging this. Alan presented Roch with a shirt signed by the Brentford Team and patiently posed for photographs.

These days, although I look forward to family visits, I do experience a certain amount of anxiety in advance. Roch doesn’t have the stamina he used to have and tires easily. I need to know that visitors will listen and understand his needs – and mine – and accept the necessary restrictions we impose. Gone are the days when a long weekend of activity, talking and socialising (especially in a group) can be managed. I hope it doesn’t feel like we are being exclusive and unwelcoming, but truly we are just trying to make sure he can enjoy himself. So we have to pace the arrangements. I think the weekend went really well and I hope everyone had a good time. A big thank you to all for keeping to the arrangements and giving us space to prepare in advance and time to rest up afterwards. It means a great deal when people listen.
Smaller groups are best now. No more big parties. It’s too difficult for him to make himself heard. More and more in conversation he misses his ‘turn’ if there are a number of participants. Gatherings  have to be managed differently. He seems so like his old self, and I’m guessing that’s a relief to people who perhaps haven’t seen him in a while – not just family, but friends too. So when people see that he’s not as altered as they perhaps had feared, they assume that he’s unchanged in other ways, too and expect the old stamina. But it’s not the same and whilst he remains essentially Roch, his physical capabilities are reduced. Of course some days are better than others.

It was a good day in October when we had a lovely visit from Marianne and Laura, Roch’s sisters. They came for the day and it was a wonderful opportunity for Roch to catch up with them and for them to spend quality time with their little brother. He is so happy that he has had time this Autumn with all his brothers and sisters.

Supported (quite literally) by three of the strong women in his life! 
* Brentford's recent winning goal against Derby County in the 94th minute produced a display of spontaneous exuberance on my part which almost went undocumented but was captured on TV camera to my great delight and amusement!